Exceptional Needs Today Issue 6

Exceptional Needs Issue 6

T O D AY

THE NEUROSCIENTIFIC POWER OF TOUCH AND MASSAGE

THE HOLIDAYS: STRESS, PLANNING, AND DEEP BREATHS

WHY COLLEGE STUDENTS NEED TO CONNECT WITH FACULTY EARLY PLANNING FOR INDEPENDENCE

BUILDING CONFIDENCE

FOR LIFE

Building Self-Esteem, Confidence, and Resiliency

Preparing a Child for a Hospital Stay

TH E OF IMPO DIA EARL RTA GN Y AS NCE OS D IS

THE VALUE OF HEALTHY SELF-ESTEEM

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.

READING IS A

NOVEL

IDEA

AAPC PUBLISHING, INC. THE ONLY PUBLISHING COMPANY TO EXCLUSIVELY PRINT BOOKS FOR INDIVIDUALS ON THE AUTISM SPECTRUM AND THOSE WHO SUPPORT THEM

www.aapcautismbooks.com

Table of

Contents

Issue 6 SIX TIPS FOR BUILDING YOUR EXCEPTIONAL CHILD’S SELF-ESTEEM, CONFIDENCE, AND RESILIENCY Temple Grandin, PhD and Debra Moore, PhD

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Discover ways to nurture a child with exceptional needs’ confidence so they can face challenges and bounce back more quickly when things don’t go as planned.

TAKING CHANCES: STEPPING AWAY OVERNIGHT AS AN AUTISM PARENT Kimberly Reeves, MEd

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Take in a parent’s epiphanies about stepping back and allowing your child an opportunity to practice independence.

KATE MAKES IT GREAT! EXPERT ADVICE ON BUILDING DECISIONMAKING CONFIDENCE WHEN YOUR CHILD HAS SPECIAL NEEDS Kate C. Wilde

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Read valuable guidance about how to stop secondguessing decisions as a parent of a child with developmental disabilities.

STRESS, PLANNING, AND DEEP BREATHS: UNWRAPPING THE HOLIDAY SEASON Chris Abildgaard, EdD, NCSP, LPC

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BECOMING A WARRIOR FOR SOMEONE YOU LOVE WITH AUTISM

THE VALUE OF HEALTHY SELF-ESTEEM WHEN THERE ARE EXCEPTIONAL NEEDS

Priya Pasumarthy, MS

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Lisa Palermo Matto

A mom shares the value of instilling confidence and self-esteem, especially when a young person is more vulnerable and subject to prejudice.

William Killion, PhD, BCBA

PREPARING DEAF AND HARD OF HEARING CHILDREN FOR THE HEARING WORLD

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Dr. Ron I. Malcolm, EdD

Read on for a list of 10 commonly asked insensitive questions about being deaf or hard of hearing that can help you familiarize a child with what they may encounter.

EXCEPTIONAL BOOKS CONNECTIONS OVER COMPLIANCE REWIRING OUR PERCEPTIONS OF DISCIPLINE Dr. Lori L. Desautels’ book reaches for sustainable behavioral changes through brain state awareness rather than compliance and obedience.

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Adopt the outlook of a warrior parent and remember there is a way forward even if you have to change course.

WAYS TO REDUCE CHALLENGING AND DESTRUCTIVE BEHAVIORS WITH SPECIAL NEEDS

10

31

Terrific reminder to take time this season to talk about what is stressful, be patient, and absorb what is good.

32 EXCEPTIONAL ADVICE FROM MESHELL SEEKING HELP: CONNECTING FAMILIES TO THE REGIONAL CENTER Meshell Baylor

Receive guidance on how to reach out for local assistance after a diagnosis.

Understand the distinction between a diagnosis and negative, destructive behaviors, including tips for lessening the frequency of such behaviors.

34 SHINING BRIGHT AS A PRIEST ON THE SPECTRUM Ron Sandison

Meet Fr. Matthew P. Schneider, an openly autistic priest advocating for increased and targeted inclusion of neurodivergent individuals in the faith’s recruitment and communities.

38 EIGHT WAYS TO BETTER CONNECT WITH AUTISTIC PEOPLE Joe Butler

Great tips to help reduce the communication gap and amplify what autistic people are saying they need to help improve interactions for everyone.

41 EXCEPTIONAL BOOKS WHERE DID GRANDPA GO?

Dr. Sara Parvinian, MD, a pediatrician and special needs advocate, has written and illustrated a supportive book to discuss the loss of a loved one with a child.

42 FINANCIAL FOCUS THE PROS AND CONS OF FUNDING A THIRD-PARTY SPECIAL NEEDS TRUST Ryan F. Platt, MBA, ChFC, ChSNC, CFBS

Our financial columnist weighs in on the pros and cons of funding a Third-Party Special Needs Trust of an adult disabled man for an 80-year-old father who is in good health.

43 HOW HELPFUL IS AN ADHD DIAGNOSIS AS A YOUNG ADULT? Faigy Liebermann, AACC, PCAC, ACC

Learn how receiving an official diagnosis can open doors to tailored support for students struggling with executive function and time management skills.

45 NAVIGATING COMMUNICATION DIFFICULTIES TO REACH COLLEGE DREAMS: AKHIL, OUR MISUNDERSTOOD HERO Manisha Lad

Bolster yourself with an uplifting story of a minimally verbal young man navigating his communication difficulties to reach his college dreams.

48 GIVING KIDS WITH LEARNING DIFFERENCES CONFIDENCE AND TOOLS TO GROW Joshua Faden

Discover a valuable model for teaching individuals how to face, overcome, and appreciate the challenges in their lives.

52 WHY COLLEGE STUDENTS WITH DISABILITIES NEED TO CONNECT WITH FACULTY Toby Tomlinson Baker, PhD

Learn why some students try to conceal a disability when starting college and why it’s essential to avoid that pitfall.

54 THREE TOOLS FOR EARLY PLANNING FOR INDEPENDENCE WITH EXCEPTIONAL NEEDS Karen Kaplan

Discover the valuable techniques, strategies, and activities that can be used to help develop a plan for adult life.

58 HOW TO START PLANNING FINANCIALLY FOR TOMORROW WITH SPECIAL NEEDS Karen Darby

Find out how family therapy can help secure support and establish communication, especially when there are exceptional needs.

61 THE IMPORTANCE OF EARLY DIAGNOSIS OF AUTISM SPECTRUM DISORDER Zachary Ginder, PsyD, MSW

Find out how early detection and treatment can provide opportunities for early life flexibility in the development of neural pathways to adjust to new ways of organizing thinking and interacting.

65 IT’S TIME TO LET GO: THE MANY WAYS PERFECTIONISM SHOWS UP IN PARENTING Rebecca Jeffreys

Excellent advice from an autism mom on the importance of pushing past unrealistic goals and stress and moving toward peace and guilt-free self-care.

68 NATURE NOTES NATURE BATHING: A MULTISENSORY EXPERIENCE FOR BETTER EMOTIONAL REGULATION Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA

Discover new ways to introduce a child to the positive benefits of green spaces to improve multi-sensory experiences and overall health.

71 THE NEUROSCIENTIFIC POWER OF TOUCH AND MASSAGE—EMBRACE YOUR DAILY D.O.S.E! Giuliana Wheater

Learn how massage and touch can help you through a time of conflicting emotions, thoughts, and anxieties.

75 HOW TO PREPARE A CHILD WITH EXCEPTIONAL NEEDS FOR A HOSPITAL STAY Bea Moise, MS, BCCS

Find out how you can prepare your child for the hospital along with developmentally appropriate language.

77 JOIN THE CHRONIC WARRIOR COLLECTIVE IN SENDING HOLIDAY CHEER Dawn Veselka, RT(T)

EXCEPTIONAL NEEDS TODAY

Exceptional Needs T O D AY

Our mission is to educate, support, and energize families, caregivers, educators, and professionals while preparing all families for a healthy future. exceptionalneedstoday.com Founder/Publisher Amy KD Tobik Lone Heron Publishing, LLC Magazine Staff Editor-in-Chief: Amy KD Tobik Editorial Assistant: Margo Marie McManus Copyeditor: Dione Sabella Professional Consultants Chris Abildgaard, EdD, NCSP, LPC Debra Moore, PhD Brett J. Novick, MS, LMFT, CSSW Annette Nuñez, PhD, LMFT Ron Sandison Amy Wagenfeld, PhD, OTRL, SCEM, EDAC, FAOTA Contact Us editor@exceptionalneedstoday.com advertising@exceptionalneedstoday.com submissions@exceptionalneedstoday.com editorial@exceptionalneedstoday.com

COVER PHOTO CREDIT – Michael Palermo

Discover an exciting social network for individuals with long-term illnesses that connects people through organized card swaps.

80 WHAT’S INVOLVED IN AN ADHD EVALUATION? Patrick LaCount, PhD

Find out about the three key components to evaluating children and adolescents for ADHD.

84 APPLIED EDUCATIONAL NEUROSCIENCE FRAMEWORK©: WHAT IT IS AND WHY WE NEED IT NOW MORE THAN EVER BEFORE Connie Persike, MS, CCC/SLP

Learn how to create trauma-sensitive environments that focus on relationships and social-emotional learning during these uncertain times.

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

Disclaimer: Advertised businesses and products are not endorsed or guaranteed

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

Exceptional Needs Today | Issue 6 | 5

From the Editor’s Desk

W

here does confidence originate? Are some people just born with it, or is it a trait instilled in us? My late father, who showered me with Latin terms on the daily, would have swiftly jumped in to tell you the word “confidence” comes from the Latin fidere, “to trust.” So, what roles do we play in developing that inner voice, that inner faith in our children and students—in ourselves? Most importantly, how can we foster enough confidence and resilience in someone we love who has developmental disabilities or is vulnerable to injustice?

Temple Grandin, PhD, and Debra Moore, PhD, say self-esteem, confidence, and resiliency don’t magically develop for kids— these traits are developed or diminished by events as a response.

It is therefore up to adults to guide children in mastering these challenges. For some excellent ideas on ways to help nurture a child’s confidence so they can more easily face life’s challenges, be sure to take a look at their exclusive article, Six Tips for Building Your Exceptional Child’s Self-Esteem, Confidence, and Resiliency.

Lisa Palermo Matto credits her daughter Marlee’s healthy confidence growing up with Down syndrome to her upbringing. “We allowed her to express herself in a respectful way. We embraced her, complimented her, called her out when she was wrong and loved her unconditionally,” Lisa wrote in her piece, The Value of Healthy Self-Esteem When There are Exceptional Needs. Marlee is now a freshman in the InclusiveU program at Syracuse University.

Lisa lovingly shares her daughter’s journey along with some information on the value of building self-esteem and confidence in young women from Dr. Beth Myers, the Professor of Inclusion and Executive Director of the Taishoff Center for Inclusive Higher Education at the university. Self-esteem and confidence, she says, are both instrumental in how women view their place in the world.

With the holidays right around the corner, it’s important to remember to slow down and focus on what makes us feel confident—what makes us feel a sense of calm. One of our regular contributors, Chris Abildgaard, EdD, NCSP, LPC, admits it can be hard sometimes when a vision for a special holiday event gets derailed. As he explains in Stress, Planning, and Deep Breaths: Unwrapping the Holiday Season, we must model for younger people how to work through those feelings and enjoy the small parts of life. As adults, we must try to remain patient—kind—and adapt the best we can.

This month Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA, shares her column space with Julia Wilson with information on ways green spaces can be used to improve multi-sensory experiences and overall health. For simple tips that can benefit anyone at any age, read Nature Bathing: A Multi-Sensory Experience for Better Emotional Regulation.

Have you experienced periods where you felt like you had to be perfect all the time—to the point you were fraught with stress and guilt? Well, you’re not alone. This month, an article that really spoke to me was Rebecca Jeffreys’ It’s Time to Let Go: The Many Ways Perfectionism Shows Up in Parenting. Rebecca said there were times she held on so tightly she was afraid the world would end if things were not perfect. So be sure to read her advice on the benefit of pushing past unrealistic goals and stress and moving toward guilt-free self-care and peace.

We also feature articles this month centered on valuable topics such as how to reach out for local assistance after a diagnosis, how receiving an official ADHD diagnosis can open doors to tailored support, ways to lessen destructive behaviors, how to prepare a child for a hospital stay, ways to give kids confidence and tools to grow, plus so much more.

We have some fantastic news to share.

Exceptional Needs Today received the Gold Award from the prestigious Mom’s Choice Awards honoring excellence! A big thank you to our contributors, subscribers, and supporters. Let’s continue to instill confidence and encourage growth in ourselves and one another.

Savor your time together—we look forward to a bright new year with you.

Best,

Amy KD Tobik

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

Finding ways to manage conflicting emotions, thoughts, and anxieties is so important for EVERYONE. Therapist and author Giuliana Wheater has written a piece for us this month called The Neuroscientific Power of Touch and Massage—Embrace Your Daily D.O.S.E!, which explains how massage and touch can ease stress, boost resilience, and improve physical health.

PLEASE JOIN OUR EXCEPTIONAL COMMUNITY

6 | Exceptional Needs Today | Issue 6

MY WORD

The Value of Healthy Self-Esteem When There are Exceptional Needs

By Lisa Palermo Matto

“Loving yourself isn’t vanity. It’s sanity.”

—Katrina Mayer

The importance of developing confidence and healthy self-esteem in young girls has been the topic of countless books, magazine articles, blogs, television segments, and self-help podcasts.

I have watched, read, and listened to countless experts weigh in on both. A girl who is confident will be inspired and excited to accept challenges, responsibility, and success. Girls with healthy self-esteem will value themselves and others. Bringing these concepts into their awareness is like unleashing a superpower.

As the mother of an exceptional daughter with Down syndrome, I have been thrilled to witness the cultural transformation when it comes to empowering young women. Marlee was born in 2000, when “girl power” (Thanks for the phrase, Spice Girls!) was at an all-time high. The fact Marlee had Down syndrome meant nothing when it came to teaching her our family’s beliefs and values.

We expected Marlee to be given opportunities, accept challenges, take responsibility, and not give up when things became difficult. We instilled in her a sense of community and belonging. We

Exceptional Needs Today | Issue 6 | 7

MY WORD

allowed her to express herself in a respectful way. We embraced her, complimented her, called her out when she was wrong and loved her unconditionally. All of these factors helped support and shape her confidence and self-esteem. These values are the cornerstones for the relationships she forms with other people.

If you ask Marlee to describe herself, she will tell you she is funny, outgoing, friendly, and nice. Her self-assessment is right on.

I would also add beautiful, confident, smart, sassy, and brave.

But as comfortable as she is in her skin, she refuses to wear her hearing aids, balks at wearing her glasses, and becomes indignant when someone has the audacity to say she has Down syndrome. She does not want to be labeled as having special needs.

The hearing aids have been such a challenge we have chosen not to continue to fight that battle. Marlee has slight hearing loss in both ears, and the aids would help improve her hearing and speech, but the fallout, if required, does not outweigh the benefits. Marlee has flushed, hidden, and destroyed three sets.

Even though they are tiny and hidden behind her hair, she will not entertain the thought of wearing them. The self-consciousness about wearing eyeglasses is something that evolved during COVID-19. Marlee has always worn glasses without a problem.

She is nearsighted, and her vision is limited without them.

During the lockdown, Marlee spent a lot of time in her room and on her phone. There was little need for glasses in that setting, and she fell out of the habit of wearing them. I believe these three obstacles epitomize Marlee’s fear of not fitting in with her peers, which puts her in direct conflict with her self-esteem.

Even though wearing glasses and hearing aids is the norm for many people, she identifies it as part of her disability, which we are not allowed to mention out loud (Down syndrome).

I would like to take credit for the amazing self-confidence Marlee possesses, but the girl literally exited the womb with swagger.

She has cultivated this gift over the years with hard work and persistence. I cannot count the number of times Marlee has said, “Mom, I got this.” I have had to learn to let go of controlling every situation. When you release control, you allow yourself to breathe and give others a chance to shine. I began to notice

8 | Exceptional Needs Today | Issue 6

that when I followed her lead, even if she came up short of her goal, there was still a sense of accomplishment. Part of success is learning from failure. It’s dusting yourself off and giving it another try.

One of the key elements of confidence is having trust in yourself.

This is something that has come naturally to Marlee. One of the superpowers of Down syndrome is living in the present. What a gift! So many people, including myself, have spent a great deal of time and money trying to master this technique through meditation, tai chi, yoga, and other mindful alternatives. Marlee has a heightened sense of awareness which allows her to focus her attention on the project at hand. When you eliminate worrying about the future and fretting about the past, there is no room for self-doubt.

“Accept who you are; and revel in it.”— Mitch Albom Dr. Beth Myers is a Professor of Inclusion and the Executive Director of the Taishoff Center for Inclusive Higher Education at Syracuse University. She oversees InclusiveU, a federally recognized model program for college students with intellectual and developmental disabilities. Marlee is a freshman in the program this year and lives on campus. When I asked Dr. Myers about the importance of building self-esteem and confidence in young women, she said, “For all young women, a positive self-esteem can be really instrumental in how they view their place in the world.

Self-confidence may give you the courage to try something new, like taking a dance class or making new friends. For young women with intellectual disability, sometimes how they have been treated by others may impact how they view themselves. It’s important for them to be able to create their own identity so they can have that self-confidence too. At InclusiveU, we work hard to be person-centered, meeting our students where they are in terms of interests and planning for college as well as future goals. We make it clear to them that this is about their wants and

MY WORD

needs; they get to make the decisions and we support them in getting there.”

Dr. Myers also spoke about the importance for women with special needs to value how they feel. She said, “This really speaks to disability acceptance and not awareness. Women with disabilities have the same desires that women without disabilities have. By giving our students the same opportunities that other college students have, in an inclusive setting, we can continue to dispel the myths that they are ‘different’ in some way. Ultimately, we want them to have a feeling of independence and self-confidence that helps set them up for success. At InclusiveU, we think that empowerment is important for our students, and that includes self-empowerment, disability empowerment, identity empowerment, and more. We get to see the amazing growth of college students over their university life—and that is a remarkable vantage point to witness how students can take control of their own futures.”

Meghan Brozaitis is a 2021 graduate of InclusiveU who transitioned from campus life to working and living on her own. She exudes positivity and shared with me how simply believing in herself makes all things possible. Meghan said the three people most instrumental in helping her to become confident were her mother, father, and brother. “They always told me I could accomplish anything. They made me believe in myself. This is why I don’t give up when things are hard.” I asked Meghan what advice she would give to young girls with special needs. She said, “Like and appreciate yourself. Always believe in yourself.”

When Marlee was born with Down syndrome, I never imagined she would have the opportunity to attend Syracuse University and live on campus. Moving her into the dorm was a surreal experience for me. As we began to unpack the boxes and decorate her space, I noticed the sense of pride Marlee was feeling for herself. “This is my room,” she said. “I did it, Mom.”

Lisa Palermo Matto lives in Central New York with her husband and two children. She graduated with a BA degree from the State University of New York at Oswego and received her teaching certification from Le Moyne College. She spent many years teaching middle school English and is presently a youth minister and motivational speaker. Lisa is the author of the book, The Up Side Of Downs, which chronicles life with her daughter Marlee, who has Down syndrome. It is a compilation of funny, touching stories that celebrate inclusion, family, neighbors, and community. Along with publishing her first book, Lisa has also been published in Exceptional Needs Today and in her blog, What Just Happened. While she always has her passport at the ready to travel, Lisa is happiest in her kitchen surrounded by family and friends, dishing up homemade pasta, sauce, and her family’s renowned pizza recipe, made famous by her late Uncle Shuffles.

Website: https://www.lisapalermomatto.com/ Book: https://www.amazon.com/Side-Downs-Lisa-Palermo-Matto/dp/B08WZH5479 Blog: https://www.whatjusthappenedblog.com/ LinkedIn: https://www.linkedin.com/in/lisa-palermo-matto-61954825 Instagram: https://www.instagram.com/themarleeadventures, https://www.instagram.com/lisamatto1/?hl=en Facebook: https://www.facebook.com/lisa.p.matto Podcast: https://theonairadvocate.libsyn.com/

Exceptional Needs Today | Issue 6 | 9

Preparing Deaf and Hard of Hearing Children for the Hearing World

By Dr. Ron I. Malcolm, EdD

PARENTS OF DEAF AND HARD-OF-HEARING CHILDREN MAY BE SHOCKED AT THE INSENSITIVE QUESTIONS OR COMMENTS THEIR CHILDREN ARE DEALING WITH DAILY. AS YOUR CHILDREN GET OLDER, THEY MAY BEGIN TO SHARE THESE QUESTIONS OR COMMENTS WITH YOU AND THE FRUSTRATIONS ASSOCIATED WITH DEALING WITH THEM. HERE IS A LIST OF 10 OF THE MOST COMMON INSENSITIVE QUESTIONS OR COMMENTS YOUR DEAF OR HARD-OF-HEARING CHILD MAY ENCOUNTER.

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PARENTAL SUPPORT

Question 1 Can you drive?

Deaf and hard of hearing people are always amazed hearing people will ask them this question. There is absolutely no connection between hearing loss and one’s ability to drive safely. It will frustrate your teenagers who are deaf or hard-of-hearing that they are being asked such an insensitive question. Deaf drivers are highly visual, which actually makes them excellent drivers. They tend to be less distracted when driving than hearing drivers.

Question 2 Can you talk?

Not all deaf and hardof-hearing children can speak, but some can. It annoys your child to have people surprised they have speech. Some adults will convey to your child that their speech is “really good” for a “deaf person.”

While the hearing person may view this comment as a compliment, it sends the wrong message to your deaf and hard-of-hearing children. They may begin to believe speech and intelligence are connected and that other deaf people who do not use speech to communicate are “less than” or not as intelligent. The other assumption many hearing adults make is that a deaf child who is speaking must have some degree of hearing ability. This is not always the case. Many profoundly deaf children can acquire speech without the ability to hear. Other profoundly deaf children may only sign. Finally, some deaf children may sign and speak. All deaf and hard-of-hearing people are different when it comes to how they may communicate.

However, speech is not always connected with how well a person can “hear.”

Question 3 Can you lipread?

Your deaf or hard-of-hearing child may express frustration with constantly being asked if they can lipread. This is especially true if your deaf or hard-of-hearing child has speech ability. Many people assume the ability to lipread is a “natural” skill instead of a “learned” skill. Not all deaf

and hard-of-hearing people are good at lipreading. Others may have great skills in this particular area. Some of your deaf and hard-of-hearing children may not want others to know they have lipreading skills. Adults assume if your child can lipread, there should be no need to sign to your child. They don`t understand how difficult and exhausting lipreading can be.

Question 4 Why do you talk so loudly?

This is an extremely insensitive comment to ask any deaf or hard-of-hearing person. Learning to speak can be a huge challenge for many deaf and hard-of-hearing people. During the process of learning and obtaining this skill, many of these children cannot hear their own voices. Telling them they are loud is like telling them to stop talking.

Question 5 What can you hear?

You can help your deaf or hard-of-hearing child be prepared for this question. People who can hear are naturally curious about what deaf people can and cannot hear.

However, the child may not like being asked this question. They need to know this is a very personal question they don’t have to respond to. This is the type of question your child only needs to disclose if they want to. Deaf and hard-of-hearing children also dislike people who attempt to “test” their hearing ability by clapping their hands behind them to see if they will respond. Your deaf or hardof-hearing child will also encounter hearing individuals who believe if they talk “louder,” your child will be able to “hear” them. Talking louder actually exaggerates your mouth movement and makes it more difficult for your child to comprehend what is being said to them.

Question 6 Why don’t you just get a cochlear implant?

Many people who can hear assume all deaf individuals with a cochlear implant can hear. This is simply not true.

Even if your deaf child has a cochlear implant, they are still deaf. Some deaf children don’t want to have a cochlear implant, while others love having one. Getting a cochlear implant does not make you a hearing person.

Question 7 Why don’t you sound deaf?

Many hearing people view this comment as a compliment to deaf people. Just because your child who is deaf can speak does not mean they aren’t still deaf. It sends the message they are “smart” because they are deaf and can speak, and that if other deaf children can’t speak, they must not be as intelligent. We would never say to an African American child they don’t sound black when they speak because they use proper grammar. It is just as offensive to tell a deaf child they don’t sound deaf because they can speak. Your deaf or hard-of-hearing child may

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PARENTAL SUPPORT

Question 10 Do you wish you could hear?

This is a common question. Unfortunately, it sends the message that being deaf or hard-of-hearing makes them “less than.” Being deaf or hard-of-hearing is their “identity,” and they should feel proud about who and what they are.

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

also encounter hearing people who insist they “forget” your child is deaf or hard-of-hearing because they don’t sound like they are. This statement sends the message that all deaf and hard-of-hearing people sound the same when using their voices.

Question 8 Do you know Braille?

So many people mistakenly associate Braille with deaf people. You’ll need to explain this to your deaf or hardof-hearing child. They may be shocked to find out people think they use Braille or offer a Braille menu at a restaurant.

Question 9 Do you go to a school for the deaf?

Not all deaf and hard-of-hearing children attend a school for the deaf. Some do, and others don’t. Many deaf and hard-of-hearing children attend their neighborhood school with their age-level peers. It should never be assumed someone attends a residential school for the deaf just because they are deaf.

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SKILLS FOR LIFE

Six Tips for Building

Your Exceptional Child’s Self-Esteem, Confidence, and Resiliency

By Temple Grandin, PhD and Debra Moore, PhD

CHILDREN’S SELF-ESTEEM, CONFIDENCE, AND RESILIENCY DON’T MAGICALLY DEVELOP. THEY ARE BUILT OR DIMINISHED BY EXPERIENCES AND FEEDBACK FROM OTHERS. WHEN SUCCESSFULLY NURTURED, THEY PROVIDE THE FOUNDATION FOR CHILDREN TO TRY NEW THINGS, FACE CHALLENGES, AND BOUNCE BACK WHEN THINGS DON’T GO AS PLANNED. HERE ARE SOME TIPS FOR HELPING A CHILD ESTABLISH THESE CRUCIAL TRAITS.

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SKILLS FOR LIFE

RECOGNIZE YOUR CHILD’S UNIQUE CHALLENGES AND ACCOMMODATE THEM

Adjust your child’s environment to bring out their greatest potential. Tell others (teachers, friends, extended family) what your child needs to engage most successfully with the world.

Here are three examples: Kyle is on the autism spectrum. He needs more time to process incoming information. Slow down your rate of speech.

Be alert for times you’re tired or stressed because you probably start talking faster. This is exactly when Kyle needs you to go slower. He’ll pick up on your tension, and his processing speed will slow down even more.

Cheyenne struggles to produce language. She needs more time to respond to your questions. She might need a full 30 seconds. Recognize her brain is silently working hard during this period. Be patient; do not prompt her or repeat your question. It just puts pressure on her.

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Austin’s traumatic brain injury interferes with his ability to shift attention. His thinking freezes up if you rush him. His brain is like a desktop computer with lousy Wi-Fi. If you try to hurry it up, you sabotage Austin. Give his brain time to come onboard. Once his “website” is up, it runs. But when he has to switch pages, it’s slow.

HELP YOUR CHILD ACHIEVE A CALM RESTING STATE AND LEARN SELF-REGULATION TOOLS

Too many children with exceptional needs live in a state of emotional, physical, or cognitive stress. Basic functions like heart rate, breathing rate, and adrenaline output are often on overdrive. Kids cannot learn or enjoy life when they can’t relax. Before expecting them to pay attention or try something new, you must help them feel safe and stable.

For lots of kids, their day will go better if it starts with relaxation techniques or simple exercise. All kids benefit from learning how to monitor and control their breath. You can

SKILLS FOR LIFE

watch online videos and then practice together throughout the day. A few stretches can also produce dramatic reductions in anxiety and arousal.

Teach your child to recognize situations that escalate their fight or flight reactions. Have a tool kit they can turn to that reminds them of their tools. This builds resiliency for when your child faces adversity and you’re not around.

Here’s one example: Anthony’s dad used colorful index cards and pictures cut from magazines to help his eight-year-old son learn and remember to use regulation skills. He put the cards in a shoe box labeled “Anthony’s Calm, Cool, and Collected Cards.” Anthony pulled out a card randomly (or could search for a favorite) every morning, when he felt a meltdown coming on, and before going to bed. His parents saw the improvement in their son’s mood and started using the cards too!

GIVE YOUR CHILD CHOICES

We all want to feel in control, and no one likes being told what to do. Presenting your child with choices is empowering. It lets them know their opinions and needs matter.

Here are two examples.

Ursula, 12, has gained weight and is approaching obesity but doesn’t want to exercise. Her mom recognizes the dangerous health consequences and is determined to help her daughter. She gives Ursula two choices: they can take a 15-minute walk each day, or Ursula can follow along with a very basic YouTube exercise program for children. It’s up to Ursula, but she has to try one of them for at least one week. These are manageable choices: time-limited, not complex, and within her range of ability.

Isaac has social anxiety and is embarrassed by his moderate speech impairments. As a result, he isolates himself in his room. His dad gave him two choices: go out with him each Saturday for a father-son ice-cream treat (where he has Isaac place the simple order) or invite the boy next door to the house to play a game.

STRETCH YOUR CHILD VIA BABY STEPS TO CREATE A SENSE OF MASTERY

Children grow by being stretched. You have to give them manageable baby steps. These steps will create some anxiety but won’t overwhelm. You can’t let kids stagnate, but you don’t throw them in the deep end of the pool either. Some parents overprotect their children, and that is a disservice. Here are a few examples of stretching your child.

Frankie, 11, does not help around the house and when asked to do a chore, often claims he “can’t.” He is starting to use his moderate physical and mild visual challenges as excuses. His

mom assigns him the chore of setting and clearing the dinner table. Frankie gets good mobility, strength, and visual depth perception practice by doing these tasks. She doesn’t give him a task requiring extensive fine motor skills, quick movements, or too much strength: these would be too much of a stretch.

Gina is on the autism spectrum and is socially awkward. She relies on her older sister to ask for help or make a purchase.

Her dad takes Gina to a small convenience store during a not-too-busy time of day. He shows her how to ask the clerk

Exceptional Needs Today | Issue 6 | 15

SKILLS FOR LIFE

where something is and how to pay for a few items. Then he has Gina try it while he hangs back. His daughter is nervous but proud of herself afterwards.

Focus on strengths and build them up. Incorporate your child’s interests into this process

Every child is wired and built differently. Know their strengths and use them as tools for growth. Use natural abilities instead of expecting a child to learn or navigate the world in ways they are not wired for. Use their interests as well as their strengths to broaden and deepen their knowledge and skills.

Here is an example: Diego is a visual thinker. He automatically sees pictures of whatever you talk to him about. He has above-average recall for what he’s seen and is good at recognizing visual patterns.

He’s not good at processing verbal information, and he can’t remember long strings of spoken instructions. Diego’s teachers and parents should write things down or use pictures to create task lists. It will help create a “pilot’s checklist” for Diego any time he needs to learn a new skill. Each item on the list should be bulleted, no more than a few words, clear, and specific. Diego will be able to complete tasks this way that he could never succeed at if someone just told him how to do it.

Diego’s main interest is dinosaurs. His teacher can teach him math by using dinosaurs in his lessons. His parents can encourage his artistic ability by having him draw dinosaurs but not letting him just draw the same one over and over. They can have him draw baby dinosaurs, winged dinosaurs, armored dinosaurs, and so on. They can help him Google images of where dinosaurs live and learn about those environments. They can find timelines, graphs, and charts (which tap into his visual pattern recognition strength) that show when dinosaurs lived. This can teach him about historical ages, evolution, and even geology.

PRAISE YOUR CHILD EFFECTIVELY

Not all praise is equal. Commending your child when they work hard, persist at a difficult task, face their fears, or perform specific laudable acts (such as helping another person) builds self-esteem and confidence. Praising them in generalizations, though, can actually undermine self-worth. Kids need to be able to anchor your feedback to specific behaviors.

Here are examples: Lani had her first swimming lesson. She was nervous and struggled more than the other children. Don’t tell Lani “You did great!” She knows she didn’t. Instead, say something like, “I’m very proud of how you gave everything a try today. I know you’re scared to put your head in the water, but you did it! With that attitude and practice, I know you are going to get more comfortable soon.”

Yoshi loved art and liked to share his paintings with his dad.

His dad’s response used to be very general. “That’s great! You have real talent.” But that never made Yoshi feel great, and it did nothing to deepen the father-son relationship. A much more powerful response might be something like this: “Yoshi, I love the colors you selected! How did you decide which ones to use?”

Insincere praise backfires. Praise used to manipulate causes resentment. Praise that is too general doesn’t sink in. And praise that is too effusive can embarrass. Remember to keep it authentic, based on qualities like effort, kindness, and perseverance, and proportionate to the behavior. That’s how to effectively reinforce your child and build genuine self-confidence.

Dr. Temple Grandin is a professor of Animal Sciences at Colorado State University. She has revolutionized the handling of livestock around the world. She is a prolific writer and frequent speaker on both animal science and autism. Her mother was told Temple would need to be institutionalized. As a toddler, she had multiple developmental delays, including speech, and was diagnosed with autism. Her life story was depicted in the award-winning HBO movie Temple Grandin.

Dr. Debra Moore is a psychologist who has worked extensively with children, teens, and adults on the autism spectrum.

She has retired from active practice and devotes her time to writing and volunteering. She and Temple have co-authored two books: The Loving Push: How Parents and Professionals Can Help Spectrum Kids Become Successful Adults (2016) and Navigating Autism: 9 Mindsets for Helping Kids on the Spectrum (2021).

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MY WORD

Taking Chances: Stepping Away Overnight as an Autism Parent

By Kimberly Reeves, MEd

IT IS SATURDAY MORNING, AND I AM THE FIFTH CAR IN LINE FOR THE WHATCOM CHIEF FERRY AT GOOSEBERRY POINT IN BELLINGHAM, WASHINGTON. THERE IS A VERY LIGHT MARINE LAYER OF FOG OVER THE BAY AS I TURN OFF THE IGNITION AND STEP OUT OF MY CAR TO WATCH FISHERMEN HEAD OUT TO CATCH THEIR LIMIT OF SOCKEYE SALMON.

Exceptional Needs Today | Issue 6 | 17

MY WORD

am looking west towards Lummi Island and wondering if he is ready yet. As I watch the ferry come across Hale’s Passage and make my way back to my rig, I whisper a small prayer: “Please let everything be okay.”

I

Once I reach the top, I call. “Hi honey, how are you doing?” I ask. “I am doing great,” replies Ry. And now I feel ridiculous and simultaneously relieved, almost to the point of crying. I begin my descent and the next part of my day.

I promise myself I will not phone to check in until after lunch, and I have recruited a small army of friends to be on standby if needed. You see, this is the first time I am leaving my son, Ryan, home alone for 24 hours. As I disembark from the ferry and make my way to the family cabin, I have an exhilarating sense of something… I can’t quite pinpoint the feeling, though perhaps it is a combination of freedom and relief. I have an entire 24 hours with no “responsibility.” I can just be Kim.

As my island time continues, I remind myself of all the milestones Ryan has achieved over the past few years. He has learned to cook, clean his bathroom, do laundry, grocery shop, manage money (kind of), has made some friends, and is getting better at self-regulating his emotions. I am very proud of his desire to gain more independent living skills and thoroughly enjoy watching his progress. I know he has enough tools in his toolbox to have a successful time home alone.

My son and I have been away from each other eight nights since his birth. Six of those nights were a residential camp for disabled children; the other two were a school retreat. In those experiences, there were more than a few adults keeping a watchful eye over my autistic son so he would feel and be safe and secure. He has just turned 21, and after two years of preparation, I’m getting out of his way. This weekend, I am trusting him to manage without me.

The remainder of my day is uneventful. As I prepare for sleep, I decide to call Ry and tell him I love him, and I hope he sleeps well. After five rings I am directed to his voicemail. Sigh, he must have his ringer off…I hope. I try one more time without success and begin to wonder if I can catch the last ferry off the island and head home to check on him. After a few minutes, I decide to stay put and stand firm in my belief that he is handling this experience without any problems.

I have my day away planned. Get to the cabin, unpack, take a long hike through the nature preserve, make some dinner, and read my newest favorite book without interruption. It may sound mundane, but I am excited to have 24 hours to myself.

The next morning, I am awakened by a pre-dawn pink glow coming in over Mt. Baker in the distance. I quickly brew some coffee and then head down to the water to catch the sunrise.

As I watch the fishing boats head out, my phone rings. It is

After unpacking, I head out to hike. As I pull up to the trailhead, I feel a sense of gratitude. I have wanted to do this hike for years, but my son either didn’t have the strength or interest to join me. At the summit of this small rise is a 360-degree view of the San Juans Islands, and it is a gloriously clear Fall Day. Locking the car and donning my day pack, I head up the trail. The first mile is a combination of waterfalls, sword ferns, and towering cedar trees. I can hear ravens calling throughout the forest. It is magical.

As I continue to climb, I feel a shift. Unexpectedly, I sense an increase in heart rate, breathing rate, and body tension as my anxiety begins to take over. What happens if Ryan forgets to turn off the gas stove? Will he remember to wear his bike helmet if he rides today? What about a seizure? He hasn’t had one in years, but it is still a possibility. My mind continues to race, and I am catastrophizing like a pro.

I resort to my bag of self-calming tricks. I answer all of my questions with the chances of these things happening and the worst-case scenario of outcomes. I realize I am being over the top with my irrational fears, but continue to struggle and regain my center. Time to do some slow belly breathing…

That didn’t help. Self-talk provides no relief. Keep walking, Kim. Use the trail and beautiful scenery to keep you present!

Finally, my nerves begin to settle, and I work my way towards the summit.

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MY WORD

Ryan! “Good morning, Mom. When are you coming home?” My heart soars. He did well, he called me, and he is ready for his adventure to come to a close. I head back to the house, pack up, and head home.

There were several lessons I learned from this experience:

1. Believe in the process. We had worked very hard for the past couple of years for this experience, and I wished I would have had more faith in Ryan’s abilities.

2. Ryan is more ready for his independence than I am.

3. It is time for me to provide him with more responsibilities and less hovering.

4. It is good to get out of your child’s way.

Love the life you live!

Kimberly Reeves, MEd, is a Professor of Biology at Whatcom Community College in the Pacific Northwest. A firm believer in the value and strength of community, Kimberly has served as a Board member of F.A.C.E.S Northwest (Families for Autism Care, Education and Support), is the faculty advisor for the Neurodiversity Club, has consulted and provided trainings for local school districts and colleges, and has assisted with Special Olympics. She provides informational support to families processing an autism diagnosis or struggling to understand and navigate their rights and responsibilities as parent advocates and guardians. She has been a contributing writer for several publications and has co-authored Raising Ryan: Living with Autism with her son, Ryan Cunningham.

Instagram https://www.instagram.com/trustysidekickadventures/ Book: https://www.amazon.com/Raising-Ryan-Ms-Kimberly-Reeves/dp/0692104518 Email: tskadventures@gmail.com

THE VANGUARD SCHOOL Guided Learning through Individualized Spectrums of Growth Leadership

Community

Integrity

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Resilience

www.vanguardschool.org admissions@vanguardschool.org

Exceptional Needs Today | Issue 6 | 19

PARENTAL SUPPORT

Kate Makes it Great!

PARENTAL SUPPORT

Expert Advice on Building Decision-Making Confidence

When Your Child Has Special Needs

By Kate C. Wilde

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PARENTAL SUPPORT

H

ello, everyone!

I can’t quite believe it is November already, and we are soon to be closing out another year with our beautiful children! I want to thank everyone who has sent in questions. I really enjoy reading them and getting to know your lovely children. Keep sending them in!

No question is too small. Keep on reaching out; you do not have to be alone.

This issue is based around creating confidence, so I thought Amy’s question below would be perfect, and I believe it will resonate with many of you, whether you are a parent or professional.

Amy from Massachusetts, US, asks: “There are so many decisions I have to make as a parent of a child with developmental disabilities. How do I stop second-guessing my decisions? I often feel plagued by selfdoubt.”

Hi, Amy! First off, I hear you. Not only are there lots of decisions to make regarding what school or therapy your child needs, but there may be many medical decisions as well. On top of that, there are many conflicting opinions on what to do, and everyone wants to share theirs with you! Although I do not know the exact cause of your self-doubt, it is my experience that self-doubt is usually a fear of commitment.

For example, I don’t want to commit myself to one course of action because what if the outcome is not what I want, and another decision would have created the desired outcome.

If it does not have the outcome I wanted, I will blame myself, telling myself I should have made a different decision. It makes sense we would then second guess ourselves because we want to move away from the blame and guilt we may feel later.

There are so many decisions I have to make as a parent of a child with developmental disabilities. How do I stop second-guessing my decisions? I often feel plagued by self-doubt

It may seem logical to base your decision on what the outcome will be, but when it comes to our amazing special children, that is something you simply cannot control. No matter what someone tells you, you are not in control of: • • • •

How your child responds to a particular therapy How they respond to a bio-medical protocol If they learn to verbally communicate The number of seizures they have

You can no more control this than you can control the weather. This can be as painful to fully realize and accept as it is freeing. Freeing in that it takes the responsibility off your shoulders. You are still the one who makes the decisions for your child or adult, but you are not in control of how they respond. That is why the antidote to self-doubt is making a decision from the right place instead of making the right decision. What’s the difference?

When we focus on making the “right” decision, we are using the outcome to determine whether it was right. This will most likely cause self-doubt because there is no way we can know that until after we have made the decision.

It can also cause us not to trust the process we just put in place. For example, in my work teaching families the SonRise Program®, I have worked with families who begin to see tremendous changes in their children. They are excited and keep going, but then maybe a month into the program, their child stops showing the same kind of progress for a while. When the parents’ decision is based on the outcome, they quickly lose faith in their original decision to do the Son-Rise Program® and stop doing it. They need their children to keep changing and growing every day and every week to reassure them they have made the right decision.

This is unrealistic. You, me, our children—no one changes and grows every day or every week. In order to grow, there have to be periods of rest and processing. When we are too focused on the “right” decision, we lose sight of this.

In contrast, when making a decision coming from the right place, we are looking at the process instead of just the outcome. That might look like basing our decision on the following: • • • • •

The philosophy of the school or therapy is something I resonate with The therapy’s method is something I would want my child to experience Knowing what I know about my child, this school or therapy will suit them The logic behind the bio-medical protocol makes sense based on the research I have read Given the knowledge I know now, this is the best choice

Amy, I hope this answer helps you and gives you a place to start feeling confident in your decisions for your child. For all

Exceptional Needs Today | Issue 6 | 21

PARENTAL SUPPORT

other readers, write in and let me know what you think. What has helped you in making decisions for your child or adult?

And of course, send in your questions. See you all in 2022!

IN SEARCH OF PERSONALIZED EXPERT GUIDANCE? Send us your parenting questions, woes, concerns, and tricky situations with your beautiful, exceptional children. This includes all you amazing professionals out there. Kate will answer up to five questions in every issue in her Kate Makes it Great! column. Kate has worked with children and adults on the spectrum for the past 30 years. She has clocked more than 20,000 therapy hours and has worked with well over 1,500 different children. Whatever you are facing today, Kate has most likely experienced it in some form. Her answers will be practical, doable, inspiring, optimistic, down to earth, and real. Together there is nothing we cannot face with a little joy and love.

Submit your questions to

submissions@exceptionalneedstoday.com

Kate C. Wilde has spent the past 30 years working with children and adults on the autism spectrum and their families, as well as with therapists, educators, and schools. She is the author of the acclaimed books, Autistic Logistics: A Parent’s Guide to Tackling Bedtime, Toilet Training, Tantrums, Hitting, and Other Everyday Challenges and The Autism Language Launcher: A Parent’s Guide to Helping Your Child Turn Sounds and Words into Simple Conversations, and is renowned for the well-attended courses she teaches throughout the US, Europe, and Asia. Her YouTube autism quick tip videos, delivered with her trademark infectious enthusiasm, have garnered a following worldwide.

Website: https://www.katecwilde.com/

CP CONSULTING

CONNIE PERSIKE, MS, CCC/SLP SPEECH-LANGUAGE PATHOLOGIST

EDUCATIONAL / BEHAVIORAL CONSULTANT 608-333-4464 https://cpconsulting.us/

22 | Exceptional Needs Today | Issue 6

Individual Student Consultation Functional Behavioral Assessments Development of Positive Behavioral Support Plans Independent Educational Evaluations Speech-Language Assessments Professional Development Development of Data Collection Measures Staff Coaching and Modeling Social Skill Evaluations Programming Audits Online Professional Development Courses for Teachers & Paraprofessionals

BEHAVIORAL HEALTH

Stress, Planning, and Deep Breaths: Unwrapping the Holiday Season

By Chris Abildgaard, EdD, NCSP, LPC

WHEN YOU THINK OF THE HOLIDAYS, WHAT IS THE FIRST THING THAT COMES TO MIND? FOR ME, IT’S BEING HOME WITH MY FAMILY, SPECIAL BREAKFASTS, TRYING NOT TO LET THE HOUSE GET TOO MESSY, AND (ESPECIALLY WHEN THE KIDS WERE YOUNGER) OVER-PLANNING AND CREATING UNREALISTIC EXPECTATIONS FOR THE DAY. LET’S BE HONEST, WE ALL HAVE BEEN THERE, THINKING THE DAY OR HOLIDAY BREAK WILL BE ONE WAY, AND IT’S TOTALLY NOT.

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BEHAVIORAL HEALTH

We go into these big times of the year with a thought, or maybe a vision. Perhaps we share that thought with others (maybe we don’t), and then a glitch occurs that derails us, our kids, and the whole family unit. I wish I can say that will never happen again. The one thing the past year and a half taught me to do was reflect on, “How do we prepare for the unexpected, how do we cope with stress when all eyes are on us, and how can we make a difficult situation a learning moment in time?”

Even though it may not feel like it, we are all better at preparing for the unexpected. Even for some of our clients and students who have a hard time with shifting or being flexible, I have seen a shift in how they handle things. We may not always like the shift in plans; however, we are getting used to it to some degree. I do believe consistency, predictability, and routine are critical things for many of the clients and students we work with. Honestly, those aspects of life are important for everyone as there is a level of comfort in those life structures. Yet when we must shift and change our expectations or plan, it brings about a level of stress for professionals, parents, and our clients/kids.

How do we deal with the possible stress that creeps up on us when a shift is needed? I talk about hitting it “head-on.” Talk about the shift, why it is needed, the fact that you will be “okay,” after, and why the shift may be helpful An example that came up in my family’s house last holiday was around our Christmas morning breakfast. For all the years my oldest daughter can remember, we always had her grandma’s French toast bread on Christmas. After the year we all had, she was really looking forward to it. Her expectations were that this past year would be like any other, and she would have her French toast bread. Christmas morning, her grandmother called and said she was sick and had to get a COVID-19 test.

She was not able to make the bread. My daughter’s expectations and assumptions were shattered. Although we saw her really upset, we reminded her Nana was not feeling well. We had to hope she felt better soon and wouldn’t have COVID-19.

I told her that even I had to shift my expectations and now must create a new plan for breakfast. It certainly was stressful and not something I planned for.

Talking out loud, telling my daughter what was in my head at the time, and validating her feelings was an important part of this whole situation. I let her know I was upset too and asked her what she needed. Asking our kids what they need (not what they want) is a critical part in helping them self-regulate and advocate for emotional support. She said she needed to

24 | Exceptional Needs Today | Issue 6

be left alone for a bit. So even though it was a holiday morning that was supposed to be this fun, family time, I had to give her that time and space. Honoring that is a huge step in helping kids understand adults hear them and support them. It was hard to see my daughter and two other kids so upset. I had to remind myself that shifting is not a bad thing. It’s a natural part of life, an essential executive function skill we all need to work on and will happen no matter how much we plan.

The holidays are a beautiful moment in time. We spend months getting ready for the big day, then it comes and goes within a blink of an eye. We have an opportunity to model for our clients, children, and students how to handle sudden changes best. Accepting that stress comes with the holidays is okay. Talk with your kids about why things are stressful. Inquire what parts of the holidays are stressful for them. Many will say, “I am stressed I won’t get what I asked for or what I

BEHAVIORAL HEALTH

want.” That’s a very real stress. Another stress may be, “Ugh! I hate having all those people in my house.” Once again, that is a real stress. Having people invade your space is never comfortable, even when they are family.

As parents, we want our kids to be excited to see family, or at the very least be kind and welcoming. So, talking with our kids about the proposed schedule for the day, the possible events happening, who will be coming, and when people may start to leave is all-important. Don’t assume your kids remember that most people start departing after dessert. Let them know that if there is a shift in the plan, they will be made aware of it.

Remember to breathe around these times. Taking time for you as a parent, educator, or clinician is so essential. Allow yourself to meet up with friends, get yourself that little something special, or watch a show only you want to watch. During these very stressful times of year, you need to make sure you are in a good place for those around you. So be ready to unwrap that stress and hit it head-on. Live out loud as you shift and breathe and make a new plan to overcome the barrier that may have fallen in front of you. Enjoy this moment in time and model for younger people how to enjoy the small parts of life and the amazing energy the holiday time brings to people and families.

Happy Holidays from myself and everyone at the Social Learning Center!

Dr. Chris Abildgaard, EdD, NCSP, LPC, NCC, is the owner and director of the Social Learning Center, LLC, located in Cheshire, CT. He has been in private practice for over 13 years. Chris earned his Doctorate of Education in School Psychology from Loyola University Chicago.

He is a Nationally Certified School Psychologist, a Board Certified national Counselor and a Licensed Professional Counselor with a specialization in Autism Spectrum Disorders. Chris also holds a Graduate Certificate from the University of Massachusetts Lowell in Behavioral Interventions in Autism. Chris is an Adjunct Professor at the University of St. Joseph’s and the University of Hartford, both located in West Hartford, Connecticut.

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

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Exceptional Needs Today | Issue 6 | 25

PARENTAL SUPPORT

Becoming a Warrior for Someone You Love

with Autism

By Priya Pasumarthy, MS

PAUSE FOR A MINUTE… YOU ARE HERE BECAUSE YOU SEEK ANSWERS. YOU ARE A NEW PARENT, A CAREGIVER, A TEACHER, A RELATIVE, A RESEARCHER, OR SOMEONE WHO DESIRES TO FIND OR LEARN SOMETHING DIFFERENT ABOUT AUTISM SPECTRUM DISORDER (ASD). YOUR CHILD OR DEAR ONE HAS BEEN LABELED AUTISTIC, AND YOU MAY FEEL TROUBLED. THIS ARTICLE IS AN ATTEMPT TO TELL YOU TO DIG DEEPER, BUILD A BETTER UNDERSTANDING OF AUTISM, AND EVOLVE AS A SMART “WARRIOR.” utism is often defined as a developmental difference characterized by difficulties with speech, communications, social interactions, and restrictive, sometimes repetitive behaviors. Autism can affect information processing in the brain and the connections and organizations of neurons, though how this happens is not often understood. It is diagnosed five times more often in males than females, and no two autism diagnoses are the same.

Sometimes symptoms exist separately and are somewhat

26 | Exceptional Needs Today | Issue 6

mild (mild spectrum), and often several other symptoms exist in comorbidity (moderate autism). Usually, symptoms are noticeable as early as 18 months to three years of age. Researchers speculate links among environmental, genetic, and medical influences may play a role in autism’s development.

While there is no known cure for autism, many supports and therapies have reduced symptoms and improved how many people function independently. Interventions such as speech therapy, occupational therapy, applied behavior analysis

PARENTAL SUPPORT

With those lists of troubling questions, we start to grapple with a difficult school system and Individualized Education Program (IEP) team. Team members talk and share reports in a series to coordinate services, accommodations, and goals.

Despite the relief of available assistance, it’s still hard to hear people tell you, “Your child might not fit into regular education or life. Your kid might not even graduate high school.” Are you going through this right now?

STOP! You mustn’t give up!

Not having a proper understanding of the situation can cause you lots of frustration and damage your child’s learning and abilities. In addition, it can delay first the growth of the child and eventually that of the family. The journey ends. You and your kid end up feeling alone. So, learn all you can…and FIND A NEW ROUTE. You might have some answers right away, or maybe it will take longer. But once you have a grasp on your child’s situation, you can move forward in some way. Never shy away from asking questions. Accept autism and embrace it. From here on out, dig deeper. Understand your kid’s diagnosis, therapies, advocacies, programs, school system, and autism terminologies so you can plan for the future.

We need to set realistic goals to gauge progress and growth. If the goal(s) is mastered, then move up, and vice versa. It’s okay to learn from mistakes. You must keep moving forward. This is the drive of an autism warrior.

We start to evolve into a better version of ourselves with “the warrior” outlook. When we are fully confident, it can be felt at home. You need to realize you are the director of this project, and you oversee how the script goes. Determination and optimism lead to a successful mission. After all, you do love your dear ones.

May these words act as a beacon of light for you, providing your family with hope and victory.

(ABA), behavioral therapy, and physical therapy—sometimes in conjunction with pharmacological therapies—may be used to improve quality of life. These therapies/treatments are often expensive but can be reimbursable for some people.

What does it all mean? There are so many unknowns for many families with loved ones on the autism spectrum. Will my child communicate? Will they make friends? Will they become independent? What about going to college? What about their quality of life? What will happen to them after we are gone? Who will be there for them?

Priya Pasumarthy, MS, is the author of Halloween at Luke’s (2019) and a health care provider. She holds a Master of Science degree in Marine Biology. She lives with her family in the Bay Area of California. She loves adventures; so far, her favorites include bungy jumping in New Zealand and hiking the Hverfjall Volcano in Iceland. Her hobbies include cooking, shopping, reading, writing, watching films, and horseback riding.

Exceptional Needs Today | Issue 6 | 27

BEHAVIORAL HEALTH

Ways to Reduce Challenging and

Destructive Behaviors with Special Needs

By William Killion, PhD, BCBA

28 | Exceptional Needs Today | Issue 6

BEHAVIORAL HEALTH

COMMUNICATING PERSONAL CHALLENGES, NEEDS, AND FRUSTRATIONS IS IMPORTANT FOR A CHILD’S DEVELOPMENT AND HAPPINESS. BUT WE KNOW CHILDREN WITH AUTISM SPECTRUM DISORDER (ASD) OR OTHER SPECIAL NEEDS OFTEN HAVE DIFFICULTY COMMUNICATING THEIR DISTRESS TO CARETAKERS AND ARE OFTEN LEFT FEELING FRUSTRATED AND VOICELESS.

F

or this reason, many children with autism and other special needs often exhibit challenging behaviors that commonly lead to self-destructive and harmful actions, which can interfere with the child’s or family’s daily life. These behaviors include physical and verbal aggression, property destruction, tantrums, and self-injurious behaviors such as hair pulling, head banging, self-cutting, self-choking, self-scratching, and more. Exhibiting these behaviors can have negative consequences for the child and loved ones—and even others around them, particularly if the behaviors are frequent and become difficult to manage.

An important distinction to note is that these negative behaviors are not caused by autism spectrum disorder or other conditions itself. Rather, they are an expression of frustrations or other underlying emotions of a child trying to communicate their emotional and physical state. Remember, all behavior has a function. Usually, it is to get something, get out of something, or achieve relief of some sensory need. A sensory need might relate to rocking or making certain sounds. While parents and other caregivers may feel hopeless at times when it comes to managing these behaviors, it’s important to understand problem behaviors are learned responses of the child and, consequently, can be changed and improved with the right approach and practice.

Below is a guide to follow in these challenging situations—a few tips to help make your work as a caregiver easier, help your child manage their emotions, and improve the quality of life for the entire family.

1. ADAPT THE ENVIRONMENT One of the first steps to reduce and manage challenging behaviors is to change the environment and adapt it to your child’s needs and stressors. It can be helpful to always keep your child informed of possible transitions. We know sudden changes can be very upsetting for children with special needs; therefore, it helps to have a schedule and keep communication open. Moreover, to make the experience of the child more enjoyable, remove or avoid disturbing stimuli and triggering situations, and always include a “safe place” where they can go to calm down.

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BEHAVIORAL HEALTH

2. PROVIDE ROUTINE AND FAMILIARITY A helpful way to avoid and prevent outbursts of problem behaviors is sticking to a fixed routine. Engage in predictable and familiar activities to help your child remain calm. Using picture schedules or lists is an easy way to communicate and reinforce routines. Also, try to keep every transition smooth, making the day as predictable as possible.

3. DO NOT REINFORCE CHALLENGING BEHAVIOR While trying to reduce challenging behaviors, it is essential to stop reinforcing them. Even accidentally, parents and caregivers often give power to these behaviors by engaging with and punishing them. However, for the best long-term results, the best strategy is to ignore the problem behavior and attempt to distract the child with other pleasant activities. The two parts of this mechanism are called extinction, where we try to ignore a dangerous behavior used for attention, and redirection, where the child is directed to a more appropriate attitude or other non-related, positive activities.

4. LISTEN AND VALIDATE As previously explained, children often engage in challenging behaviors to communicate a state or need. Therefore, it is important to understand the logic behind every behavior together with your child and always validate their real emotions.

5. SELF-MANAGEMENT LEARNING Finally, your child will eventually need to learn how to manage their own behaviors. With growth always comes independence, and it is both important and rewarding for children with special needs to take personal responsibility. They should also feel a sense of accomplishment upon successfully communicating and/or handling their needs. Teaching self-management is not an easy task; therefore, we advise you to always talk to an expert.

Sources https://www.autismspeaks.org/sites/default/files/2018-08/Challenging%20Behaviors%20Tool%20Kit.pdf https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3990505/ https://link.springer.com/content/pdf/10.1007/s10803-017-3361-4.pdf

William Killion, PhD, BCBA, is a Board-Certified Behavior Analyst, Speech and Language Pathologist at Springbrook Autism Behavioral Health in Travelers Rest, SC, with 40-plus years of direct experience with individuals with developmental disabilities including autism. After receiving his BS in Speech Pathology with a minor in Psychology, Dr. Killion went on to attain an MEd in Special Education and a PhD in Developmental Psychology. He previously ran a private practice for Applied Behavior Analysis that serviced many areas of the state. He has served as adjunct psychology professor and consultant to psychiatric and behavioral facilities for behavioral plans for children and adults with autism and other developmental disabilities. He is the author of the Functional Independence Skills Handbook or F.I.S.H. Developmental Program, a curriculum for ABA used in 83 countries and translated into many languages. Dr. Killion is a frequent national speaker on ABA and how to address significant negative behaviors.

Website: https://springbrookautismbehavioral.com/

30 | Exceptional Needs Today | Issue 6

EXCEPTIONAL BOOKS

Connections Over Compliance Rewiring Our Perceptions of Discipline

By Lori L. Desautels, PhD The developing brains of our children need to “feel” safe.

Children who carry chronic behavioral challenges are often met with reactive and punitive practices that can potentially reactivate the developing stress response systems.

This book deeply addresses the need for co-regulator and relational touchpoint practices, shifting student-focused behavior management pro-

tocols to adult regulated brain and body states which are brain-aligned, preventive, and relational discipline protocols. This new lens for discipline benefits all children by reaching for sustainable behavioral changes through brain state awareness rather than compliance and obedience.

“A roadmap and resources to help educators move to a brain-aligned preventive discipline model based on modern neuroscience. Dr. Desautels explains that regulation, control, empathy, and kindness are skills that need to be taught and modeled just like math and reading.”

—Guy Stephens, Founder and Executive Director, Alliance Against Seclusion and Restraint “This book is truly an essential tool for any teacher or direct caregiver that wants to understand behavior and know how to help children connect, heal, and move into a positive life trajectory.”

—Scott E. LePor, D.O., Medical Director of Texas Juvenile Justice Department, Trauma Informed, Trust Based Relational Intervention (TBRI®) Practitioner/Educator

Amazon: https://www.amazon.com/Connections-Over-Compliance-Perceptions-Discipline/dp/1948018896

Lori L. Desautels, PhD is an Assistant Professor at Butler University in the College of Education where she created a graduate certification program in Applied Educational Neuroscience/Brain and Trauma. Lori was an Assistant Professor at Marian University in Indianapolis where she founded the Educational Neuroscience Symposium, currently in its eighth year, attracting the foremost experts in the fields of educational neuroscience, trauma, and adversity. Lori has conducted brain institutes and workshops throughout the United States, Canada, Costa Rica, and Dubai on Mind Brain Teaching and Learning. She has created webinars for educators, clinicians, and administrators illustrating how educators and students alike must understand their neuroanatomy to regulate behavior and calm the brain.

Website: https://revelationsineducation.com/

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32 | Exceptional Needs Today | Issue 6

a diagnosis or is informed their child has a disability, parents experience what renowned psychiatrist Elizabeth Kübler-Ross called the stages of grief. The stages are denial, anger, bargaining, depression, and acceptance.

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The stages of grief deal with death, but to most families who have a child with a disability, there is a sense of loss. As parents, we develop high hopes and dreams for the future of our children; it is very normal to have aspirations for the overall growth of your child. Parents wonder what kind of individuals their children will grow to be, but for parents of children with special needs, feelings of stress, change in family structure, and a profound sense of grief and loss that can accompany a diagnosis impact the parent’s emotional wellbeing.

Parents go through the stages of grief associated with loss: • • • • •

Special needs children and adults deserve love and support to achieve their dreams and live a happy, healthy life. A diagnosis is not the end of the world but rather the beginning of an adventure.

Meshell Baylor is a mother of four children—two of whom are on the spectrum. She serves her community as a social worker and community advocate within the Los Angeles area. She has a bachelor’s degree in Human Services from Springfield College and a Master of Science in Human and Social Services. Meshell continues to volunteer and give within her community while serving the special needs community.

Denial (“This isn’t happening,” “Why my child…?”)

Anger (“But I did everything right! This just isn’t fair!”)

Bargaining (“If I volunteer or pray harder…It will be better.”)

Depression/Sadness (“I feel so lost…”)

Acceptance (“We will get through this.”)

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Once a parent has gone through these stages, they begin the process of intervention. This typically includes connecting with their primary care physician, special education team, and local, regional center.

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The regional center provides support services to individuals with a disability and their family; the family dynamics within the home have likely been deeply impacted.

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This coordinator acts as a social worker and liaison that connects the client and family with services that will benefit the client as well as the family.

The regional center has support groups for mothers, fathers, siblings, and children dealing with the transition.

These services are only a fraction of what the regional center can provide for families.

Most families are unaware of where their local, regional center is located or how to obtain services. The feelings of confusion, anxiety, and loneliness trigger the cycle of grief all over again.

How can parents contact their local, regional center? They can contact 211 services for information and ask for the local, regional center within their area by zip code.

Once the local, regional center has been contacted, schedule an intake. The process should mimic the following: • • •

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The regional centers serve as bridges to helping many families relieve stress. Regional centers are places where every child or individual with a disability is equally treated.

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Exceptional Needs Today | Issue 6 | 33

EXCEPTIONAL ADVOCATE

Shining Bright as a Priest on the Spectrum

By By Ron Sandison “I HAVE WHAT’S KIND OF A STEREOTYPICAL AUTISTIC MEMORY FOR DETAILS AND FACTS, WHICH HAS BEEN HELPFUL IN DIFFERENT WAYS AS A PRIEST.”—FR. MATTHEW SCHNEIDER

F

r. Matthew P. Schneider, a priest with over 65,000 followers between Twitter and Instagram, is completing both a doctorate in moral theology and the final edits for a book on autistic prayer. Shortly after his ordination in his early thirties, Matthew was diagnosed with autism. This diagnosis gave him insight into his role in the priesthood.

Born in Calgary, Alberta, Canada, Matthew was the only boy out of four children. “My childhood was generally uneventful.

I had a very happy home life; my parents were loving and accepting of all my quirks. I did well at school. I was top five in academics and didn’t focus as much on friends as most kids did, but I didn’t think of that as an issue at the time,” he recalled.

34 | Exceptional Needs Today | Issue 6

“I remember a few times when I would have been

diagnosed were I a child today. There was a specialist who came to examine why I had such bad handwriting (dysgraphia), and she couldn’t figure out why. Had the DSM-5 criteria been around then, she likely would have sent me for further tests, and I would have been diagnosed with Asperger’s or autism spectrum disorder.”

As a child, Matthew experienced proprioceptive difficulties— his poor understanding of his body in relation to other objects and people caused Matthew to appear clumsy and awkward.

As a result, he was bullied at times, but his size generally protected him from physical abuse. Nevertheless, his middle

EXCEPTIONAL ADVOCATE

school years were a challenging period. “I was a bit of an outcast in middle school,” he explained. He struggled with making friends and socializing, but bonded with a new student in his last year before high school. “We clicked, so we were best friends and enjoyed programming computers. We were happy being nerds, knowing we’d never be the popular kids,” he said.

During his first year of ministry as a priest, Matthew was assigned a school chaplain and youth ministry leader position for three years. He had difficulty relating to his students and the staff. At the end of the first year, things weren’t working out for Matthew. The school administrators shared their concerns that he might have Asperger’s and asked him to leave.

“After my friend moved back to his former city, I attended high school across town at a study-at-your-own-pace high school (the curriculum was normal, and you were expected to finish in the same number of years, but you mainly studied on your own rather than went to class). It was kind of unique, but I did pretty well; I was able to zoom through classes where I excelled and not get bored.” The social structure was very different from what Matthew understands as typical in most high schools, but it worked in his favor since he could easily hang out with computer nerds and join the Magic Club.

Looking back, Matthew sees the school experience as a blessing because it led to his autism diagnosis, an improved understanding of himself, and the ministries best suited for him.

After failing as a school chaplain, he went to a psychologist for a diagnosis; unfortunately, they were unable to perform autism-specific tests. A year later, in 2016, Matthew sought a second opinion and, after tests, received a diagnosis of autism spectrum disorder.

Matthew learned to socialize in high school through observation and analysis of proper behavior. He consciously examined social interactions and then imitated them. Matthew enjoyed math, reading, and philosophy, and he used his mental capacity in these fields to compensate for the struggles he experienced with soft intelligence. “I was consciously doing what others did subconsciously. Our conscious brain with autism works slower, so I’m still not the best, but I am passable in most social situations, and I’ve learned to ask for clarification when I’m not sure.”

Sensory issues cause Matthew to have a narrower range of comfortable light and a sensitivity to certain sounds. He loves to have bright lighting in his office but wears sunglasses outside to block sunlight. When downtown Matthew brings his hi-fidelity earbuds to prevent a sensory overload from unexpected noise. He also finds comfort in deep pressure and rocking.

Matthew’s family attended Mass every Sunday and occasionally prayed together. In his teenage years, he began searching for answers to perennial questions like “Why we are here?” and “What is the meaning of life?” As he studied religion and philosophy, he discovered answers to his questions in Catholicism.

“My final year of high school, I was one of the super-religious teens and took my faith seriously. During this time, I thought about becoming a priest.”

After high school, Matthew decided to pursue a computer engineering degree and stay active in the Catholic group on campus. After two years of studying engineering, he left for the seminary after hearing an inspiring message by Pope St. John Paul II. “I just knew God called me to be a priest and serve Him. My mom was supportive relatively quick after I said I’d join.

Dad was a little more hesitant, but he always kept the attitude of he’d rather me be successful as a priest than be unsuccessful in a secular career.”

As Matthew described in an interview he did with Learn from Autistics in 2020, “At first, I was devastated, and not sure where to go, but as I read more and more, I realized this was me, and it was not just a slight personality variant, but a whole different brain structure of seeing the world. I remember reading that most people do theory of mind subconsciously. I’d always done it consciously and had assumed others did too, but when I asked and found out they did it subconsciously, I was certain of my diagnosis.”

In a video released April 2nd, 2019 (World Autism Awareness Day), he decided to go public with his autism diagnosis. As Matthew explained to the Catholic News Agency in an article called, At the Intersection of Faith and Autism—A Catholic Priest Shares His Story, “I realize the need to evangelize this segment of the population; we’re about 1.5 percent to two percent of the population. We have a much higher chance of being atheists, a much lower chance of attending religious services on a weekly basis… We need someone to reach out to our community, to enculturate the Gospel to the autistic mind.”

Matthew said he went public with his autism diagnosis for four reasons. The first was because he wanted to help guide other people on the spectrum with spiritual disciplines. He has written his first book on autistic prayer, which Pauline Press is publishing soon. “Sometimes people struggle to understand how other people are thinking as we talk with God,” Matthew explains, “and once prayer and expectations have been adapted for the autistic mindset and we know we can communicate with God directly without the limitations of human language, it can be freeing.”

Second, Matthew says he wanted to create awareness in the Catholic community of autism. “Fr. Mark Nolette went public before me, but that was about the only one with a name you can find online. Having a few priests who are public about their diagnosis helps others see autism in a proper light.”

Third, for transparency and to resolve any personal issues in the future by letting people know he is autistic. “If I meet some-

Exceptional Needs Today | Issue 6 | 35

EXCEPTIONAL ADVOCATE

one and I come across as awkward or don’t read their social cues right, knowing I’m autistic helps them to realize I’m not being rude. It also helps me in that I don’t need to mask as much.”

Finally, Matthew says he wants to better adapt the gospel better to the autistic mind. Faith is often presented in an emotional way, and people on the autism spectrum tend to think more logically, he says. Presenting a more logical explanation, so people understand why, is so much more helpful.

Matthew had a few fears with disclosing his diagnosis: “I was worried about two things. First, I was worried that people would discount my other opinions thinking that an autistic person is not intelligent despite proof to the contrary. Second, I was worried about being pigeon-holed or cut off from speaking about any other topic than autism in Catholic circles, and I want to be able to present on many different subjects, including the topic of my doctorate: moral theology.”

Autism has provided Matthew with some gifts as a priest: “I have a very strong memory and am able to con-

nect many concepts together. I had good enough grades to go further in my studies, but before I was diagnosed, it looked like I’d just have the normal education for a priest equivalent to a Master of Divinity. After my diagnosis and talking to my superiors, we discerned that going a more academic route would probably be best for me, and this led to me currently writing a doctoral thesis where I think the autistic focus, memory, and data processing/pattern recognition [would] have been helpful.”

As an autistic priest, Matthew has his humorously literal thinking moments. “One time, I was cleaning the gutters at the house of my religious community and forgot to tell people to move their cars, so I got a bunch of leaves on one of the vehicles. The community member whose car was caked with leaves informed me that I needed to clean his car completely and wax it before he would let me off the hook. I thought he was serious and got really worried about making a later appointment until his car was washed and waxed. That afternoon, we went to lunch, and I asked him about waxing his car, and he said that he was only joking, and it was fine with a two-minute hosing.

This short task did not destroy my schedules for the day.”

Matthew shares how the Catholic Church can encourage people with autism to join the priesthood, “We need to offer spiritual direction for autistic individuals. I think we need to have visible autistic priests like Fr. Mark Nolette and me, and to offer accommodations for people who might excel in some ministry (hospital chaplain or professor) but not be equipped for other ministries requiring more social skills like a pastor, which is the most common priestly ministry… We don’t just want to teach

36 | Exceptional Needs Today | Issue 6

autistics the faith, but to live the faith fully by participation in apostolate (religious leadership) and ministry.”

Matthew’s doctorate is the right to privacy in Catholic moral theology. “Genetic privacy examines how companies might use genetics in the hiring process, which would likely be discriminatory for a number of neurodiverse conditions. This may be the case for autism, but even more so for other conditions.

If someone had bipolar disorder but had it managed on meds and didn’t want their boss to know, such tests could reveal the information since this condition is about 70 percent genetic.

Ultimately, I found a topic where the Church should speak but has not spoken much so far; thus, my thesis can play a vital role in this important ethical discussion.”

Matthew’s goals include finishing his doctoral degree, attaining a professor position in a seminary, and writing on moral theology and inclusion in the Church. In addition, he hopes to help parishes and diocese establish ministries for autistics.

Matthew’s message is simple: “Jesus loves us and wants the best for us. As autistics, we have the opportunity to experience God’s love in an autistic way. We don’t have to conform our own experience of God, in prayer and in the liturgy, to how others think, but we can experience it our own way, which is 100 percent valid.”

Fr. Matthew P. Schneider is a priest with the Legionaries of Christ and was ordained in 2013. He lives in the Archdiocese of Washington where he helps at Our Lady of Bethesda Retreat Center and produces material for Regnum Christi.

Facebook: https://www.facebook.com/FrMatthewLC/, https://www.facebook.com/AutisticPriest Instagram: https://www.instagram.com/frmatthewlc/ Twitter: https://twitter.com/FrMatthewLC

Resources

https://the-art-of-autism.com/father-matthew-schneider-navigating-life-as-priest-on-the-autism-spectrum/ https://www.patheos.com/blogs/throughcatholiclenses/?fbclid=IwAR3jCU30kTgbSd1XdE5WSGn2FKmHSXJrg9AI7N82MVsCQ8qVRlZz7xUsjVM https://www.learnfromautistics.com/autism-interview-152-fr-matthew-schneider-on-autism-and-religion/ https://www.catholicnewsagency.com/news/40939/at-the-intersection-of-faith-and-autism-%E2%80%93-a-catholic-priest-shares-his-story

Autism Awareness Day Video: https://www.youtube.com/watch?v=nHGPeGbheSY Ron Sandison 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 Autism Society of America, the Art of Autism, and the Els Center of Excellence. Ron has a Master of Divinity from Oral Roberts University and is the author of A Parent’s Guide to Autism: Practical Advice, Biblical Wisdom published by Charisma House, and Thought, Choice, Action. He has memorized over 15,000 Scriptures, including 22 complete books of the New Testament. Ron speaks at over 70 events a year, including 20 plus education conferences. Ron and his wife, Kristen, reside in Rochester Hills, MI, with their daughter, Makayla.

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

COMMUNICATION STRATEGIES

Eight Ways to Better Connect with Autistic People

By Joe Butler

WE ALL WANT TO BE HEARD AND UNDERSTOOD. OUR ABILITY TO UNDERSTAND OTHERS AND EXPRESS OURSELVES FLUCTUATES DEPENDING ON OUR INTERNAL STATE, E.G., STRESS LEVELS OR TIREDNESS, AND THE CONTEXT WE ARE IN, E.G., PLACE, PEOPLE, OR TIME. FOR AUTISTIC PEOPLE, COMMUNICATING WITH ALLISTIC (NON-AUTISTIC) PEOPLE CAN BE BEWILDERING AND EXHAUSTING. THIS CAN LEAD TO MUTUAL FRUSTRATION AND INEFFECTIVE COMMUNICATION FOR EVERYONE. ADAPTING COMMUNICATION In a world where allistic people are in the majority, there is a common and damaging misconception that autistic people are poor communicators. In reality, autistic people may communicate as effectively as allistic people, especially with other autistic people, but their communication needs are simply different. It is the responsibility of allistic people to understand those differences and to adapt their communication style to enable clearer mutual understanding.

I have worked with autistic children and young people in ed-

38 | Exceptional Needs Today | Issue 6

ucation settings for more than 20 years, and more recently also support autistic adults and their employers/colleagues to better understand any communication differences in the workplace. In that time, I have learned ways to make my communication more successful and less confusing for autistic people. I have recently used this knowledge and experience to co-author Is that Clear? Effective Communication in a Neurodiverse World, a short and practical guide offering communication tips for allistic people, inspired and contributed to by autistic people.

COMMUNICATION STRATEGIES

I have adapted the following tips from that guide and hope you find them helpful—whether as a family member, friend, colleague, educator, employer, or health professional—in helping you communicate more effectively and to amplify what autistic people are saying they need. You may also find these tips useful in helping younger autistic people to better understand communication differences and advocate for their needs and preferences. These are general tips. It is important to remember any adaptations you make need to be person-centered. What works for one autistic person may not work for another, so ask (or find out) from the individual and keep checking and trying.

1. Slow down Sometimes receiving information from someone who is speaking too quickly can be overwhelming for an autistic person. Allistic people can find slowing down difficult at first. You may start slowly but then find yourself speeding up. Adding pauses is an excellent way to adjust the pace of your language and gives your communication partner time to process. It is important not to fill these pauses with more language; the autistic person works hard during these silences.

2. Find a quiet location Try to find quieter places to talk. Be aware that surrounding noise, chatter, or activity can often overload and distract your communication partner. Consider the impact sights, smells, taste, and touch can also have, especially in busy, unpredictable environments, where lots of different sensory information might be overwhelming.

3. Make it personal Use the person’s name so they know you are speaking directly to them. Avoid giving instructions using generic and abstract terms, such as “everyone,” “all students,” or “Class 4,” as these may not resonate with the autistic person. Use, “Samira, sit down now please,” rather than, “I need the whole class to sit down.”

4. Give clear instructions It is helpful to give clear and concise instructions, broken down into manageable chunks. Allow the person time to process and respond. Consider asking them to repeat back the instruction, so you can check whether they have understood you correctly. If you need to repeat the instruction, then try to use the same words (unless you were originally unclear), ideally backed up visually. Using new words may add to any confusion and mean your communication partner has to begin reprocessing your request from the beginning.

5. Keep questions clear and direct People use questions in many different ways, including rhetorically. It can be difficult for some autistic persons to determine which questions need an answer and how much information is being requested from them.

Try to make questions clear and direct and limit the number you ask. Avoid open-ended questions, such as “How was your day?” The autistic person may feel obliged to provide you with every detail of their schedule. If questions involve choice, limit options to make them more manageable. For example, “When do you want to meet—Tuesday or Wednesday afternoon?”

6. Avoid vague language Allistic people regularly use vague or ambiguous language as part of everyday conversations. One example is in time expressions, where not only might the concept of time be difficult, but also the language used to describe it. Some autistic people may benefit from specific timing rather than phrases such as “See you later,” or “I’ll be there soon.” When precise times are used, they cannot always be trusted e.g., “Just wait a second,” so try to give realistic and accurate timings and stick to them.

Language may also be ambiguous because it has unclear or multiple meanings. For example, saying someone is “pretty upset” could be problematic for many reasons. Firstly, “pretty” here means quite or rather, but it can also mean beautiful. Added to that, “upset” refers to an emotional state which might be difficult for some autistic people to relate to. It’s hard to know exactly what “upset” means here—is it sad, angry, or both?

Also, phrases such as “jumping to conclusions” or “getting the wrong end of the stick” have figurative meanings, which are very different to their literal meanings.

Autistic people can find vague and ambiguous language confusing. Whilst it is impossible to avoid it completely in spontaneous conversation, try to limit its use and check your communication partner has understood you correctly.

7. Don’t forget nonverbal communication Verbal language is one form of communication. We also communicate with our actions, such as body language, eye contact, gestures, or through touch. Our actions often enhance what we are saying. If our communication partner is autistic, they may find allistic nonverbal communication difficult to interpret. If our nonverbal communication contradicts our words, this can be even more confusing.

Allistic people may make eye contact to let others know they are listening to them. However, when autistic people listen, they may find it distracting or even painful to make eye contact. We should never insist on eye contact and instead, adjust our allistic expectations.

Equally, allistic people can misunderstand how autistic people might communicate nonverbally. Repetitive sounds or

Exceptional Needs Today | Issue 6 | 39

COMMUNICATION STRATEGIES

need to use written words and/or visual aids to communicate instead.

Be flexible and open to different ways of communicating, and support and validate what is most effective and inclusive for the autistic individual.

Joe Butler (pronouns: she/her) is an education/autism consultant who has worked with autistic children and young people in the UK for over 20 years. For the majority of that time, Joe taught and led in an autism specialist school for pupils aged four to 19, latterly as a headteacher.

She continues to work in both mainstream and special schools as a specialist advisory teacher. Joe provides consultancy and bespoke training for education, youth and adult organizations, as well as for workplaces, both in the UK and internationally, through her company SEND Support. She regularly speaks at conferences and events, and is committed to learning from, sharing, and amplifying the voices and experiences of autistic people to increase understanding and drive positive change. Joe worked with language specialists Zanne Gaynor and Kathryn Alevizos to co-author Is That Clear? Effective Communication in a Neurodiverse World. Joe can be contacted for training and support around any aspect of better understanding autism, including for workshops on communication-based on Is That Clear? through her website and via Twitter.

movements (stims), such as humming or rocking, some autistic people need to do may confuse an allistic person. However, these might be vital in enabling an autistic person to focus or communicate emotions. Stims may support an autistic person’s self-regulation—that is, how they manage their emotional well-being or balance their sensory needs. Stims should never be discouraged unless harmful, in which case less harmful alternatives should be explored with the autistic person.

Learn from your communication partner about how nonverbal communication works for them and adapt your own style and thinking accordingly.

8. Use visual aids Many autistic people find visual information easier to retain than spoken information. Diagrams, planners, schedules, and mind maps can all be useful visual aids to support understanding. An autistic person may find it helpful to refer back to these aids to remind them what was discussed and help them understand and prepare for what is happening now and next.

Just as visual aids can support a person’s understanding, some non-speaking autistic people also express themselves through written words or symbols/pictures (including through the use of technology). In situations where stress levels rise, some autistic people who usually communicate verbally may

40 | Exceptional Needs Today | Issue 6

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No less. No more. This book can be a conversation starter to be used in similar situations. It is written and illustrated by a pediatrician with special interest in child development and behavior.

“A very special book to help children understand that while their loved one is no longer with them, their love lasts forever. I particularly like the simple straightforward telling and the sweet illustrations. There may be many books addressing the loss that a child may feel, this one addresses the memories that the child has gained and will cherish for the rest of his life.

Dr. Parvinian is a very sensitive writer and clinician.”

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Dr. Sara Parvinian, MD, is a retired pediatrician and an advocate for children with special needs! She is also a mother of two adult children and grandmother to two lovely granddaughters. As a member of the American Academy of Pediatrics (national and Illinois chapter) and the founder of GRASP nonprofit foundation, she is a supportive factor in Individualized Education Programs (IEPs) for families at local schools. In addition to working with children, she also enjoys walking, painting, sketching, and nature Email: Graspfoundation2017@gmail.com

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FINANCIAL FOCUS

The Pros and Cons of Funding a Third-Party Special Needs Trust

By Ryan F. Platt, MBA, ChFC, ChSNC, CFBS I AM 80 YEARS OLD AND IN GOOD HEALTH. WHAT ARE THE PROS AND CONS OF FUNDING A THIRD-PARTY SPECIAL NEEDS TRUST FOR MY 45-YEAR-OLD DISABLED SON AT THIS TIME VS. FUNDING THE TRUST AT MY DEATH? The main advantage of funding your son’s Third-Party Special Needs Trust while you are alive is for continuity of care. If you take the time to create the trust as a stand-alone trust that exists today, then you can acquire the necessary tax identification number (called EIN) from the IRS, and set up an account in the name of the trust. Once the account is established, you can fund your son’s trust with a small amount of money. In this way, your son’s trust is open, and you do not leave that responsibility to the people who will come after you (when you die) to handle all the steps necessary to open the account and then fund it. It also means the next caregivers will have access to some money to continue to provide for your son’s needs while your estate is being settled.

be one less thing for the next people to do when you die. They can simply focus on ensuring the remaining assets you want to use to fund your son’s trust are allocated properly and are deposited in the trust account. The next caregivers will also have access to the money in the trust to continue to pay for your son’s needs without having to wait for your estate to settle. This means his care needs will continue to be met without being put on hold.

The disadvantage to funding your son’s trust while you are alive is that the amount of money you place in the trust is only usable for your son’s benefit. This means the money you place in his Special Needs Trust is not allowed to be used for your benefit or to pay for any of your expenses. The money in the trust can only be used to pay for your son’s needs. A second disadvantage to funding the trust with a large amount of money before you die is that the trust may pay a higher tax rate than you do as an individual. Trusts typically pay higher taxes than individuals; however, this is dependent on the individual’s tax rate.

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Instead of thinking about funding your son’s trust as an “either-or,” think about it as an “and.” Consider funding your son’s trust with a small amount of money while you are still alive, so it is active. In this way, setting up your son’s trust will

Setting up your son’s Special Needs Trust and funding it with a small amount of money today and then having the majority of the funding of the trust occur at your death blends the best of both worlds. This technique will:

• •

Allow your next caregivers to have access to some money to continue to pay for your son’s needs Remove one more step for the next caregivers to worry about (i.e., setting up the trust) Keep the majority of your money in your name, paying individual tax rates versus a possible larger tax liability that may exist if that larger amount of money resides in a Special Needs Trust

Please contact us with any other questions you may have.

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. A Special Needs Plan isn’t a subsidiary or an affiliate of MML Investors Services, LLC, or its affiliated companies. This article is not a recommendation or endorsement of any products.

Website: http://www.aspecialneedsplan.com Phone: 704-326-7910 Location: 101 N. McDowell Street, Suite 120 Charlotte, NC 282

42 | Exceptional Needs Today | Issue 6

EVALUATIONARTICLE AND DIAGNOSIS HEADER

How Helpful is an ADHD Diagnosis as a Young Adult?

By Faigy Liebermann, AACC, PCAC, ACC

These skills don’t come easily to people with ADHD. Lagging executive function skills such as organizational problems, impulsivity, and time management issues are the hallmarks of this diagnosis. Students DO YOU THINK YOU MIGHT HAVE ATTENTION-DEFICIT/HYPERAC- with ADHD can’t fall back on these skills since TIVITY DISORDER (ADHD)? IF SO, HERE’S WHY YOU SHOULD SERI- they are the skills they are weakest in. They need specialist tools to develop these skills.

OUSLY CONSIDER GETTING AN OFFICIAL ADHD DIAGNOSIS.

ADHD affects every single area of life. Read that sentence again.

Let’s first focus on the top four qualities every successful student needs to possess to succeed at college: 1. Sticking with things even when the going gets tough (perseverance) 2. Time management and organizational skills 3. Striking the right balance between fun and work 4. The ability to delay gratification and focus on the big picture

ADHD treatment is pills and skills. You need both to live your successful life.

A diagnosis opens the doors for treatment. Getting an ADHD diagnosis gives you access to and funding for specialist help in the above areas, so you can connect with coaches who can teach you these vital skills. It can also enable you and your family to accept yourself for who you are. Your ADHD does not define who you are; it is simply another feature of your unique personality. A diagnosis turns your “whys” into “whats.”

Exceptional Needs Today | Issue 6 | 43

Here is the good news: I have seen in my over 15 years of experience working with students and teens with ADHD that they are often very gifted.

Here is the bad news: They often need help in certain areas due to their brain wiring, which is different to those who are neurotypical. If you have ADHD, your talents are not contained within the vessel of healthy executive function skills (life skills), and your gifts will likely go to waste if not cultivated in a way that works for you…

Getting yourself diagnosed stops the guilt. Getting yourself diagnosed stops the shame and self-blame. You are not lazy.

You are not stupid. You just have ADHD, and parts of your brain work differently. Your ADHD is separate to who you are.

If you are a student in college or university and haven’t got a proper diagnosis, NOW is the time to get it. Many colleges and universities offer help and additional funding for those with extra needs and diagnosed learning challenges. Use the resources you have available to help you.

It’s crucial to get the help now in the form of learning specific study skills.

Go and find a specially trained and qualified ADHD coach who will guide you with executive function, organizational, and time management skills unique to your brain. It will make a world of difference to your studying lifestyle. I’ve seen too many college students who haven’t had the help they needed become dropouts and go south very quickly.

Although learning these skills will do a world of difference, they very often need to be accompanied by pills. Medication compensates for the biological problems at the root of your ADHD. It may take you some time to find the right medication and correct dose but keep on trying until you do. Each case, of course, must be judged on its own merits, and everyone reacts differently to medication. You may need to try out several different types and brands until you find one that works for you.

There are still far too many people in the UK and the USA who are falling through the cracks and not accessing diagnosis and treatment. Many of my clients have children with ADHD. They are often hesitant to give meds to their child or teen. My experience has shown that medication can be massively powerful in helping students focus and get through school.

Consider the following question carefully: You have only one life to live. Why should you live a more difficult life just because you have ADHD? There are tools out there to help you with your unique challenges. Educate yourself about the many myths and overcome the stigma. If you are a student, you owe it to yourself, your family, and anyone who makes your acquaintance to be the best version of yourself.

If you are a parent of a child whom you suspect has ADHD, you owe it to your child and your future grandchildren to get them diagnosed and pursue the help they need to succeed in life.

I am Faigy Liebermann, AACC, PCAC, ACC, a pioneer, trailblazer, and a visionary disrupter. I bravely challenge current misconceptions around ADHD and ADHD management. I am an ADHD coach and a professional trainer. Through my daily struggles and training, I have created rock-solid tools, guiding my clients to live successful lives. As a mother to five children and having struggled with ADHD myself, I have a unique understanding of the challenges and strengths of ADHD. I am proof to women worldwide they can live a successful life with ADHD. In the last five years, I have done more to educate and raise ADHD awareness in the UK than any other coach. I have authored three books about ADHD, one of which is a book series for ADHD women titled Banish Your Overwhelm. There are currently two more books in the pipeline. I founded my coaching practice, Focus with Faigy, in 2015. As the first ADHD coach to achieve PAAC certification on the PCAC level in the UK, I am setting the gold standard in ADHD coaching in the UK. I am a staunch advocate for ADHD women in the UK and worldwide, providing my clients with rock solid, proven ADHD skills to unlock their potential.

Websites: https://focuswithfaigy.com/, https://www.organisepro.com/

44 | Exceptional Needs Today | Issue 6

MY WORD

Navigating Communication Difficulties to Reach College Dreams: Akhil, Our Misunderstood Hero

By Manisha Lad Imagine waking up one day and realizing you are not yourself, unable to control your mind or body. You want coffee, but the word “tea” comes out of your mouth. You start clapping automatically and can’t control it. I want to welcome you into the world of our only son Akhil, who exhibited such behaviors due to autism spectrum disorder.

The things we all take for granted in moving our bodies and communicating with each other were monumental tasks for Akhil. From a young age, he struggled with things the rest of us practiced naturally.

Akhil didn’t have any physical disabilities or gross motor delays, but he was stuck in his own world. Minimally verbal, he had no reliable mode of communication. He couldn’t express himself with words or use gestures. His future looked bleak, but with self-determination and the support of a loving family, Akhil became a story that inspires us. Akhil teaches us to never give up aon our dreams because if you work hard and face your challenges, you can make them a reality.

The early years As a young boy of 10, Akhil was greatly misunderstood. He was extremely hyper and found it impossible to sit still. He behaved this way at home and school. His most important problem, however, was a lack of communication. As his mom, I tried to encourage him with the help of picture exchange communication methods, but we had no success. We sent him to the best behavior therapy school with high hopes but were disappointed in the school’s negative feedback, which simply stated he didn’t know his numbers, colors, or shapes.

Everything changed the moment Akhil was exposed to an iPad at the age of 11. His silence finally ended.

Broken silence At this age, Akhil had extremely limited language and only verbal imitation; he was not able to express his daily needs, and

his vocabulary was inconsistent. One day Akhil had a meltdown and started hitting me. I then used the iPad and asked him what was wrong. With supported typing he explained, “I am telling you in mind, and you are not listening.” Continuing my curiosity, I learned from him that he thinks “in pictures,” as if he was talking, but I could not hear it. I gratefully accept-

Exceptional Needs Today | Issue 6 | 45

MY WORD

ed his mode of communication and presumed competence.

However, I realized his inner world was not at all like ours. I needed two things to understand our son’s mind: a solid relationship with him and his complete trust.

Akhil had struggles we couldn’t always understand, but he had great aspirations to research medicine. We wanted to make it a reality for him. However, once his academic journey started, we learned it was hard for him to follow steps in his mind.

Easy exercises we took for granted, like jumping jacks or yoga stretches, were nearly impossible for Akhil.

We’d gotten our son back from the silence he dwelled in, but now we feared we would lose him because of the struggles within his mind.

Relationships were complicated for Akhil since he found it hard to communicate. He was a visual learner and thinker, and he would put even auditory stimulation into pictures. For Akhil to thrive, I had to understand him and change my thinking. If Akhil stood a chance to live the life we dreamed for him, we needed to stimulate both the left and right hemispheres of his brain.

The long journey to communication and education At the age of 13, Akhil couldn’t form relationships with others.

Then, he started showing extreme anger: pulling hair, slapping others on their heads, and pinching them for up to 20 minutes.

I felt like it was a complete out-of-body experience. How could this be my Akhil who was behaving this way?

With the iPad facilitating our communication, I asked him why he would do these things. It had become overwhelming, and I wept as I typed. Finally, he looked into my eyes, recognizing my pain, and that was the moment our relationship changed.

He typed, “I cannot see my body in the mind.” We started using age-appropriate education methods, and soon, he was involved in our daily conversations.

The method of communication Akhil was using is called “supportive typing,” and although it is unproven and controversial, it was a great hope to us. Mathematics was his strongest skill.

We encouraged him to start with academic education, but it was challenging.

Our next goal was to focus on his reflex integration to get him functional and transition him to the Rapid Prompting Method (RPM).

Akhil was a visual-spatial thinker and needed a unique teaching style in pictures that offered him time for processing, as well as a significantly less restrictive environment. Unfortunately, the school was too overwhelming and caused a lot of sensory overloads; he had constant tantrums and aggressive episodes.

46 | Exceptional Needs Today | Issue 6

We felt like we knew two versions of Akhil, the one at home and the one at school. Then we picked up a book that made it all clear. It was a book by Sally Goddard called Reflexes, Learning, and Behavior: A Window into the Child’s Mind. The book taught us the brain’s left hemisphere is responsible for language, speech, analytics, mathematics, and thinking in words, while the right hemisphere is visual, emotional, intuitive, and can think holistically.

We continued learning about the RPM method, an educational and communication method developed by Soma Mukhopadhyay. She taught her nonverbal son how to write and type and is the author of many books on the subject.

Growing to independence With the help of RPM, I could get Akhil to use a letter board to communicate at the age of 15. It was an age-appropriate academic-based method where the teacher stated information, asked questions, and the student responded. As we started using RPM with Akhil, my relationship with him began to strengthen. I was able to learn about my son’s understanding, reasoning, and inner world. Our sessions would include auditory, tactile, and visual prompts.

MY WORD

RPM allowed us to build on other skills, including cooking, daily living, arts, and motor skills. With the help of RPM and Neurosensorimotor reflex integration work, we were able to get Akhil to move from supported typing to independent pointing. Furthermore, he would verbalize letters as he pointed to them.

Akhil was vocalizing more, allowing us to enroll him in online courses with credits.

Though his school was doing RPM, they still had no track for college education, and he couldn’t form relationships due to anxiety and sensory overload. So, we had to hire tutors to teach him, with me being his communication partner.

To get such professionals is expensive, as it is backbreaking work that requires unbelievable dedication. Therefore, people would come and leave. Akhil had an interest in astrophysics and expressed he wanted to research medical science.

We had to make different types of keyboards for algebra, geometry, scientific symbols, and more. Digital transformation was needed as our next goal for Akhil was to get him more independent.

The exploration journey started now. Apart from his education and neurosensory motor work, we also had to find a college path. He was setting an example that being nonverbal doesn’t mean one can’t still perform at a higher level.

College days Akhil became a college student undertaking an Associate Science Degree at the age of 19. He did this even though he was barely verbal. Luckily, minimally verbal or even nonverbal individuals can learn with the assistance of digital tools. As days passed, we were finishing online courses and collecting those transcripts needed for college education. But the other challenge was we needed a suitable college for Akhil. So we started visiting colleges willing to accept Akhil, understand his accommodations, and accept communication partners in his session.

The saying goes, “Where there is a will, there is a way,” and it proved to be accurate, although it took us five years. Finally, we got our son into Rowan Community College in South Jersey. We were able to get three individuals with autism to get college admission and use RPM as a communication method.

This was an incredible milestone. An admission letter came that stated Akhil was accepted as a freshman pursuing an Associate Science Degree.

We decided to try one subject: Survey of Mathematics. It was July 2020 when he got accepted, and college was starting in September 2020. It was a time controlled by COVID-19, and all education was online. So the only option was digital online education with in-person home tutors also only available on Zoom.

While his school was using Google Classroom, we tried Google Jamboard and Whiteboard with Akhil. With the help of Nearpod, we were able to digitize his lesson plans and combine other digital tools into one platform. Nearpod was the solution to our problem.

Akhil had to use the mouse and click on the answer. Then, his teacher would make the lesson active and present to him digitally as a communication partner. We had to create lesson plans and integrate other digital tools like Quizlet and YouTube. Auditory and visual channels were used automatically.

Finally, the information was presented digitally.

When it came to tactile prompts, we used geometry models and other 2D models. We had a new challenge. How would we do algebra and geometry online? Could we integrate them with Nearpod? Yes, we found digital websites like Graspable Math and GeoGebra.

Instead of writing the entire expression as Akhil points or making an algebra board, we had to create an activity sheet in Graspable Math. This led to direct independent interaction with Akhil and his tutor, so we didn’t need any algebraic symbols or number boards. While exposing him to chemistry, we often created activities, and Akhil would select the correct answers.

This is the incredible story of how our son, Akhil, completed many of his college courses with a GPA of 4.0 in math and algebra. We will always be thankful for digital transformation as it was the key to Akhil’s success. Akhil is my hero and is also an inspiration behind the Akhil Autism Foundation, which can provide consultation for digital education for students.

Manisha Lad is an Autism Coach and Holistic Health Coach, as well as the Founder and Executive Director for the Akhil Autism Foundation. “Each day, make a difference in someone’s life and transform yourself every moment” is the mantra of her life. She is an exceptionally dedicated professional with keen interpersonal, communication, and organizational skills. Despite a flourishing career in Information Technology, she decided to quit in 2001 when her only son Akhil was diagnosed with autism.

Websites: www.akhilautismfoundation.org, www.heal-wellness.com Facebook: https://www.facebook.com/Akhil-AutismFoundation-193013717392677 Twitter: https://twitter.com/akhil_autism LinkedIn: https://www.linkedin.com/in/manishaladaaf/ YouTube:https://www.youtube.com/channel/ UCx0nxq4v2m8Rti2wwQkB2sg?app=desktop https://www.youtube.com/channel/ UCoC2Hv0gNxCnDh5wjdzaScQ?app=desktop&view_as=subscriber

Exceptional Needs Today | Issue 6 | 47

SKILLS FOR LIFE

Giving Kids with Learning

Differences Confidence and Tools to Grow

By Joshua Faden IN A RECENT CONVERSATION, MY MOM DREW COMPARISONS BETWEEN MY CONFIDENCE-BUILDING WORK WITH STUDENTS AND THE CHILDREN’S STORY, THE LITTLE ENGINE THAT COULD. SHE SAID, “YOU HELP YOUR STUDENTS TO THINK THEY CAN!” JUST LIKE THE LITTLE BLUE ENGINE WHO SAW A SEEMINGLY INSURMOUNTABLE TASK OF PULLING A TRAIN OVER A MOUNTAIN, MANY OF MY STUDENTS FACE UNBELIEVABLY CHALLENGING CIRCUMSTANCES—IN AND OUT OF SCHOOL.

M

y joy is having the opportunity to encourage and support my students as they “puff, puff, puff,” and “chug, chug, chug,” their way to overcoming these difficulties. The key is finding ways to connect with each student as the exceptional individuals they are and to help provide them with tools for building strong foundations. The more I thought of this metaphor, the

48 | Exceptional Needs Today | Issue 6

more I could see my work in this story. So, allow me to explain my confidence-building work through the lens of the Little Blue Engine!

At first, when the Little Blue Engine saw the mountain and the size of the train that needed to be pulled, the task seemed too daunting. Similarly, when a student is learning a new concept

SKILLS FOR LIFE

My joy is having the opportunity to encourage and support my students as they “puff, puff, puff,” and “chug, chug, chug,” their way to overcoming these difficulties. or skill, it can feel intimidating. In my book, The Confidence Project: A Journey Through the Confidence Constellation, I introduce a model called the Challenge Cycle that I use with students to help them go from feeling intimidated by challenges to excited.

The first phase of the Challenge Cycle is Increasing Receptivity. This phase is all about teaching our children how to open themselves up to the challenges they face so they can begin to formulate plans and view themselves as capable of conquering their challenges. When the Little Blue Engine stepped up to the mountain, she was considering whether she could achieve the goal. Tapping into our motivation for facing challenges is about understanding all aspects of the challenge and knowing why we should even put forth an effort.

Once our children believe they can tackle a challenge, we help them to see all the tools they have at their disposal. I call this Increasing Awareness, the second phase of the Challenge Cycle.

The Little Blue Engine needed to know how she could hold on to the train cars, how she could pull and tug, and how she could go slowly and at her own pace. Our children need to know what we are asking them to do to overcome their challenges and what steps they need to take. They also need reminders that they can go at their own pace.

Of course, there comes a point when dealing with a challenge when we must face the reality that it is hard. When the Little Blue Engine was making her way up the mountain, surely there were moments when she thought she had bitten off more than she could chew. Perhaps she really wasn’t strong enough or big enough or capable enough to take an entire train over a mountain. Why had she even begun trying? This self-doubt and frustration is natural. I call the Challenge Cycle’s third phase Managing Frustrations. Our children are trying to put all their skills together at once to overcome challenges and find their confidence. It can be overwhelming. It is in this phase when our children may look up and think the mountain seems too steep or their challenge too difficult.

The opportunity is for the Little Blue Engine—and our children—to see how far they have already come. The work they have to do now is to push past the insecurities that make them feel they were foolish for trying. However, we can help our children look back at their progress and show them how much they have learned and accomplished. Our children have opened themselves up to their challenge, increased their awareness of the challenge, and they have been putting in work. Sometimes we all need a reminder of how much we have already done to get us to the point where we are even able to try to make it up and over the mountain. That becomes the motivation for moving forward.

Our job becomes helping our children understand and value the work they have done (and can continue to do) to overcome their challenge. The fourth phase of the Challenge Cycle is called Valuing the Effort. When The Little Blue Engine was puffing and chugging and getting into a strong rhythm, the task seemed less formidable. As she climbed and climbed, she could see the top of the mountain approaching, and she soon realized her effort was paying off. When our children begin to find ease in a problem that caused them distress, they begin to realize

Exceptional Needs Today | Issue 6 | 49

SKILLS FOR LIFE

all their efforts are worth it. There is a sense of pride and accomplishment that comes with knowing that you can achieve your goals when you put in the work. The train that the Little Blue Engine was pulling carried toys and dolls that brought children in the city over the mountain immense joy. This, in turn, brought the Little Blue Engine much happiness.

When we accomplish what we set out to do, we can find great excitement. The challenge itself can become the thrill. I call the final phase Valuing the Challenge. I always tell my students I not only want them to overcome their challenges but to learn how to find enjoyment in the challenge itself.

I would like to think after the Little Blue Engine got to the village with the train and toys and dolls in tow that she was exhilarated by the challenge and perhaps even began seeking out other interesting challenges. This is our work as parents and educators, to not only help our students be open to their challenges but also find delight in their journeys. By teaching our children how to work themselves through their Challenge Cycle, we provide our children with the ability to “think they can!” That is how they will continually achieve their goals and learn to manage their challenges more effectively, efficiently, and joyfully.

Joshua Faden is the Founder and President of Community of Teachers, an educational consulting and tutoring company in Washington, DC that focuses on building student confidence. He just published his first book called The Confidence Project: A Journey Through the Confidence Constellation, which is available now on Amazon! He also co-hosts a podcast called Amplifying Optimism in Education. Prior to starting his company, Joshua was a third grade teacher at a public school in Washington DC. He has worked with students of all ages as well as teachers and parents in the United States, Costa Rica, Morocco, China, Brazil, and Finland. Many of his third grade students are now confident college students, and he relishes that they continue to share their journeys with him.

Website: www.communityofteachers.com

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50 | Exceptional Needs Today | Issue 6

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EXCEPTIONAL NEEDS TODAY

EXCEPTIONAL EDUCATION

Why College Students with Disabilities Need to Connect with Faculty

By Toby Tomlinson Baker, PhD

THINK OF YOUR FAVORITE HIGH SCHOOL TEACHER. THEY INSPIRED YOU, SUPPORTED YOUR DREAMS, AND ALLOWED YOU TO BE YOURSELF. THEY HELPED YOU WHEN YOU WERE STRUGGLING TO LEARN SOMETHING DIFFICULT. YOU PROBABLY IMAGINED THEM GOING TO COLLEGE WITH YOU AND TEACHING YOU EVERY COURSE YOU TAKE. YET, WHEN YOU GRADUATED FROM HIGH SCHOOL AND STARTED COLLEGE, YOUR FAVORITE TEACHER WAS NOT THERE ANYMORE.

F

or post-secondary students with disabilities, meeting new faculty, particularly professors with PhDs, can be daunting. The last thing these students want to do is introduce themselves by saying, “Hi. I’m Joe. I have a learning disability and ADHD, and I’m in your class.”

Certainly, for a student with disabilities (SWD), there are more effective ways to communicate their needs.

Some freshmen with disabilities tend to conceal them in the hopes of being viewed no differently from any other student.

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Many post-secondary SWDs face new academic challenges such as varied schedules, time management, and seeking out assistance from faculty independently.

Even if every other step goes as planned when SWDs go to college, they face the barrier of the stigma associated with having a disability. Since many post-secondary SWDs yearn to avoid negative interactions with faculty, they hold back on asking for assistance. In addition, they may fear faculty predetermine a lower grade for an SWD, assuming they are simply a C student.

EXCEPTIONAL EDUCATION

Support from higher education faculty is crucial to post-secondary SWDs’ academic success. This is a complex issue in higher education. Some faculty say they have positive interactions with post-secondary SWDs, yet the students may not agree. In fact, sometimes post-secondary SWDs feel faculty believed them to be incompetent or that they should not be enrolled in school. Other post-secondary SWDs feel many professors do not know how to instruct them properly or provide their accommodations.

tend to feel like they have less of a disability when they connect on a deeper, more meaningful level with higher education faculty. These successful moments may eventually lead to greater academic success in college and an authentic mentorship between the SWD and their faculty.

SWDs may succeed in concealing their disability in some circles and even escape the negative effects of the stigma attached with their disability. It can feel like they have outgrown their disability, which is not true. This may lead them to deny they need academic assistance, which can backfire in the end.

So how do post-secondary SWDs connect with faculty?

The first step is for SWDs to register with academic services or the accessibility department. Ask campus officers about various faculty members. An SWD could ask, “So Dr. Smith is teaching my Ethics 101 course. Can you tell me about Dr. Smith? What is she like?” Being informed about their future professors can put an SWD at ease, particularly while they complete the campus process of informing their future professors about their disability.

Next, reach out to each professor via a brief phone call, email, or short office meeting. An SWD can say, “Hi, I’m Amy. I just wanted to make sure you received the letter regarding my accommodations.” (Never say “my disability.”) Then, tell the professor about YOU and your achievements, not your disability. “I am interested in this class because…” Let the professor know you are there to learn. You are not expected to know everything.

Establish a growth-oriented mindset and practice humility.

And ask your professors questions like “Where are you from?” or “Why did you choose this textbook?” and listen to the answers. This will often allow them to be open with you.

Post-secondary students with disabilities who connect with faculty will often have a greater college experience. Start slow and have one or two positive interactions with faculty.

Simply talking to a professor and having coffee with them can allow for an SWD to have the feeling of success. Some SWDs

As a researcher at Pepperdine University, Toby Tomlinson Baker earned a PhD focusing on higher education faculty training, self-advocacy for students with disabilities, and policy reform. She has 12 years of experience as a Special Education Instructor and currently teaches with the Los Angeles Unified School District. She is a certified Trainer of Teachers for the district. She is also the recipient of the Learning Disability Association’s (LDA) 2020 Harrison Sylvester Award and CHADD’s 2018 National Educator of the Year.

Website: https://tobytomlinsonbaker.net/

Exceptional Needs Today | Issue 6 | 53

SKILLS FOR LIFE

Three Tools for Early Planning for Independence with Exceptional Needs

By Karen Kaplan

EVERY STUDENT RECEIVING SPECIAL EDUCATION SERVICES IN PUBLIC SCHOOL HAS AN IEP (INDIVIDUALIZED EDUCATIONAL PROGRAM), AND WHEN THEY TURN 16, THE SCHOOL DISTRICT MUST FACILITATE AN ITP (INDIVIDUALIZED TRANSITION PLAN) THAT PREPARES THE STUDENT TO LIVE, WORK, AND RECREATE OR EVEN ATTEND A POSTSECONDARY EDUCATIONAL PROGRAM.

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I

t is never too early to think of the techniques, strategies, and activities that can be implemented to help your child or student reach independence. I have seen many families reluctant to nurture independence, and then when their child is 18, 19, or 20 with only one or two years left in the public school system, they become panicked.

There are tools families and schools can use to help see the student’s interests and abilities as well as hopes, dreams, and challenges in order to develop a plan for adult life. These tools are student-focused. They take time. They take research efforts. They take collaboration. They take creativity. They will hopefully wake everyone up to see what skills and resources

SKILLS FOR LIFE truly need to be put in place to support a successful adult life.

These tools can be used by the IEP, Individualized Transition Plan (ITP), and Individualized Program Plan (IPP) teams.

The Circle of Friends The Circle of Friends tool can help parents and teachers identify students who need help in building a circle of support.

Friends who may listen, give advice, or provide support when needed are those in this group.

The tool asks that we draw four concentric circles and label them one, two, three, and four.

The first circle represents a Circle of Intimacy. These are people we cannot live without. The second circle is a list of good friends and called the Circle of Friendship. These are those who may not have made the first circle.

The third circle is the Circle of Participation. This is a list of people, organizations, and networks we are involved with (dance clubs, choir, sport teams, technology clubs, etc.). Finally, the fourth circle is the Circle of Exchange. This is a list of people who provide services to us (medical professionals, hairdressers, teachers, mechanics, etc.).

People can be in more than one circle.

Teachers might do this exercise in the classroom with all students to help them understand how it might feel not to have friends (lonely, confused, rejected, isolated, frustrated, unwanted, depressed), and then they might discuss what students might do because they feel this way (stay in bed, take drugs, isolate, try to make friends).

Sometimes other students may then want to help students at risk develop friendships and connections. They become buddies and share how they are making connections, hoping it may help others.

When families of children with special needs do this type of work, they begin to see the need to help develop lists at each circle so their child may have connections established by the time they reach adulthood.

For example, if a student had no friends, parents and teachers might then identify groups or organizations they could join according to their interests (art, horseback riding, boy scouts, camp, or computers), thus helping them make connections in the Circle of Participation. Teachers might also identify classes within school the student could join that develop their interests, thus enhancing group participation. At young ages, teachers can create group projects around lessons to encourage group participation. Some schools develop lunch buddies or work buddies.

PATH PATH, the second tool, was developed by Jack Pearpoint, John O’Brien, and Marsha Forest in 1991. Facilitators are trained at the Marsha Forest Center for Inclusion, Family, Community in Toronto.

The steps of PATH are: 1. Create a clear picture or vision of where the student wishes to be 2. Identify goals to focus on the next year to keep grounded 3. Identify the people to enroll in the journey 4. Recognize ways to build strengths 5. Chart action steps to achieve the goals PATH asks that a circle of support be created. This is a group of people who agree to meet on a regular basis to help the person with a disability accomplish certain personal visions or goals. They help them overcome obstacles or open doors to new opportunities.

Parents can invite a variety of people to the PATH meeting.

Family members, school staff, church members, or neighbors have been asked. The meeting can take three to five hours.

Meetings include the person with the disability. There may be the need to do some advance planning with the student, helping them express their own ideas for the future and how

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to agree or disagree with what other members are offering.

There are generally six-plus people to encourage varied experiences and perspectives.

Sometimes the family puts limitations on the possibilities of the person with challenges. They also may not be aware of many services and options. Assembling a team of varied perspectives can expand their beliefs, attitude, knowledge, and resources. One or two facilitators can be a good idea. One person may draw people out to offer ideas while the other is recording information.

PATH is a place for brainstorming and sharing creative ideas.

It is a safe, respectful, non-judgmental tool. The meeting may focus on the history of the person, their strengths, interests, dreams, fears, and needs to begin with. Then participants may begin to identify resources, strategies, supports, and finally, the development of action plans to reach goals set by the team.

PATH is recommended for families who want to work together and friends and colleagues who want to make a difference.

Once the PATH team develops a vision with goals and action plans, the parents can use the information to work with the IEP and ITP team to build the transition plan.

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MAPS MAPS (Making Action Plans) is the third tool. MAPS is a planning process used by educational teams to help plan for a student’s future. It uses a Person-Centered Approach, and is based on the person’s dreams, interests, needs, and fears. The family may take the lead position at these meetings or work in collaboration with the transition team.

MAPS teams usually include the student, parents or guardians, one or more special education teachers (and perhaps the assistant), a social worker, community-based agencies, family members the parents feel should be involved, and advocates.

There is a facilitator and recorder at the meeting. The meeting should take at least one hour. The facilitator will always ask the student to respond first, then family, and then other members. All ideas are expressed in a positive manner.

Parents may help the student first talk about their life (where and when they were born, brothers, sisters, school, friends, places visited, and things enjoyed). Then the discussions are focused around the student’s dreams (jobs, living, college, school, money). There are no judgments made at this time about dreams.

SKILLS FOR LIFE

The student will be asked to talk about their fears and anxieties. Parents will be asked to discuss their fears and anxieties as well. Members of this team are then asked to describe the student’s strengths, likes, dislikes, and personal qualities as well as favorite activities, friends, talents, etc.

While considering the student’s hopes and interests, the team develops a list of activities, opportunities, and supports to address those hopes and interests. Finally, members begin reviewing all the information and start prioritizing. A list of needs is created to address priorities.

Some needs might be to complete a vocational assessment, begin job exploration, increase involvement in community activities, or begin the exploration of living options or skill development in a specific area.

All ideas and thoughts are prioritized, the most critical goals identified, and action plans are written. The facilitators gather up all notes, summarize them, and share them with all members of the team. The team meets yearly to check on progress towards goals written.

expand the scope of education methodologies and truly develop goals that help a student live as independently as possible. Introduce self-help and hygiene tasks early. Give exceptional needs children classrooms jobs with another student in kindergarten. Teach play and talk about not repeatedly touching noses. Make sure they have their communication device with them everywhere.

Teach them to self-regulate, not just co-regulate. Follow their interests. Learn to wait for them to initiate; do not open their lunch bags for them, put away their backpacks, or tell them what they need to do before going to recess and verbalize directions all day to them. Get them into the community learning to connect early. Make sure goals and activities used are meaningful. Learn to understand the culture of the family.

Don’t waste time teaching coins and dollars if the student is going to use a credit card and still doesn’t understand quantity, adding, or subtracting.

Let’s do something different now. Our students are graduating at age 22 with very limited options. Let’s use these tools prior to and during the IEP and ITP processes to expand options.

I suggest parents and school teams become familiar with these tools and begin to use them early. My hope is that schools will Resources

PACER CENTER: http://www.pacer.org/tatra/resources/personal.asp

MPACT: Transition to Empowered Lifestyles Project Person Centered Planning: http://www.ptimpact.org Person-Centered Planning Education Site: http://www.ilr.cornell.edu/edi/pcp/

Karen Kaplan is a native San Franciscan. She completed her bachelor’s and master’s degrees at Arizona State University, Tempe, Arizona in Speech Pathology and Audiology. She minored in Special Education. She obtained her Speech Therapist and Special Education credentials in California. She worked as a speech therapist for both public schools and private schools before opening her own residential and education program for students with autism spectrum disorders. She worked in credential programs at Sacramento State University as well as UC Davis. She spent 20 additional years directing private schools for those with autism and similar learning challenges. She founded a small non-profit, Offerings, which travels globally helping other cultures understand those with developmental challenges. She founded and facilitated an autism lecture series and resource fair for seven years in Northern California. She still facilitates an Autism Awesomeness event yearly, showcasing the strengths and talents of those who live on the spectrum. Karen is currently consulting, helping families, schools, and centers for children, teens, and adults. She has published articles to help bring ideas and strategies to families and professionals, providing hope. Karen authored Reach Me Teach Me in the early 70s and went on to publish her second book, On the Yellow Brick Road: My Search for Home and Hope for the Child with Autism, in 2017. Her third book, Typing to Heaven and Back, is not about autism but about having important conversations with those we love. Be sure to connect with Karen—she is always ready to listen and think of the possibilities.

Website: www.karenkaplanasd.com

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FINANCIAL FOCUS

How to Start Planning Financially for Tomorrow with Special Needs

By Karen Darby

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FINANCIAL FOCUS

ONE OF THE TOUGHEST QUESTIONS WE ASK AS PARENTS IS WHAT WILL HAPPEN TO MY CHILD WHEN I’M NO LONGER ABLE TO CARE FOR THEM?

T

his is a universal question, but when it comes to a child with special needs, this question is never outgrown. As a parent, what can you do to help ensure your child’s financial security? Many parents have an idea of what they need to do, but the complexity involved becomes a hurdle, and figuring out where to start can be overwhelming when emotions are mixed in with the planning.

Most of the parents I meet have a child between 13 and 18 years old. This is a common age because they are through the difficult and hectic years of diagnoses and the early learning stages, and now, they are at that age of transition.

They are starting to think about applying for government benefits, guardianship versus power of attorney, and what the next chapter after school in their adult life will look like.

Upon meeting with parents, they typically express their concerns about saving for their child’s lifetime care needs.

They know their child won’t be able to have a job that would provide the same lifestyle they are accustomed to, and they typically don’t know where they stand financially for their own retirement goals, let alone saving for their child’s life after they are gone. This is an emotional conversation to have, and it’s important to be able to express fears and concerns so they can be addressed.

I remember asking a parent once why they think so many families don’t meet with a professional to address this type of planning, and she said it’s because we can’t even think about not being there to care for our kids. I’m sure everyone can relate to that. Making these decisions and realizing that day will come when you won’t be the primary caregiver for your child is difficult to accept. The reality is, if you don’t have a plan in place, I can guarantee the outcome will be far worse for your child than the temporary discomfort you feel during these conversations. That’s when the experience of a professional financial advisor can help you and your family.

What is it like when you meet with an advisor to discuss your situation? You want to find someone that has experience working with families that have a loved one with special needs. The right professional can help you with a coordinated plan that centers around your child and encompasses their government benefits, guardianship, power of attorney,

a letter of intent, special needs trust, and an ABLE account.

The first step in working with a financial professional should be to get an understanding of where you stand today and what your current and future goals are for yourself and your children. Having more than one child can add to the complexity in your plan as everyone feels differently about equalization of financial resources. You want to make sure your needs and goals are heard and understood by any professional you work with. Be prepared for this process to take some time as there are a lot of moving parts.

Remember, what you put in, you get out. If you are open and honest and take the time to meet with your advisor and gather your financial statements, you will have a more robust plan.

During this process, you will be asked some difficult questions, and sometimes this is what stops people from seeking advice. Take some time to think about what you would like to accomplish prior to meeting with the financial professional, and know you can always make changes in the future. The best advice I can give you is to create a plan as if something were to happen to you tomorrow and then review it annual-

ly to update as life changes. Some of the toughest questions you will be asked are the what-ifs. What will happen to this plan if you or your spouse become disabled and can no longer work? What will happen in the event of an unexpected death? What will happen if you have a long-term care event?

Do you have the resources to sustain one of these events?

Who will take care of your children when you are no longer able to? These questions are uncomfortable, and no one wants to think about the outcomes, but they are necessary.

You want a plan that accounts for the unexpected because life has a way of not going as planned. Preparing for the unexpected will be uncomfortable, and you may find that you and your spouse have different views and opinions. Having a professional to help guide you and advise on what they

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have experienced will help you make an informed decision that is right for all involved.

In the end, you will have more clarity regarding your finances. You will have a plan that encompasses your whole family. Siblings will understand the plan and know what their part is and what is expected of them. Some parents do not want to burden a sibling with the caregiving or financial responsibility of caring for the sibling with special needs; this will be different for each family. Putting the work in now will

give you peace of mind, knowing that you planned for the expected and unexpected, and no matter what happens, your family and loved ones know what your wishes are. I hope this helps parents who are unsure of whether or not to seek advice. If that is you, I hope you find someone you feel comfortable with and will take the time to get to know your family. Please feel free to reach out to me with any questions you may have. I always enjoy hearing from other parents.

Karen Darby is a Wealth Management Advisor with Jacobi Capital Management, a registered investment advisor.

Jacobi Capital was founded on the idea of thinking things through backwards. This view helps to identify potential risks before implementing strategies for clients. Karen has a decade of experience in the financial services industry, focusing on working with families that have a loved one with special needs. She is passionate about helping her clients get clear on their financial goals, create a plan, and implement strategies. Karen enjoys spending time with her two sons and is involved in many organizations within the community.

LinkedIn: http://www.linkedin.com/in/karenrdarby/ Website: https://www.jacobicapital.com/

Most approaches to enabling children with autism to speak either don’t work or alienate the child…or both. The Autism Language Launcher gives you something totally new: a step-by-step guide that ignites language lift-off by:

ilde

Kate C. W

 Tapping into your child’s innate intelligence (often unrecognized by others)  Going with your child instead of against your child  Building the relationship necessary to inspire your child to want to communicate  Giving you the tools instead of outsourcing them to someone who doesn’t care as much as you do  Providing techniques that work with adults on the spectrum, too!

If you are a parent, relative, professional, educator, or caregiver of a child or adult who is: not yet verbal, making some sounds, using some words, speaking in single words, or using two-word phrases, then this book is for you. In a caring, understanding, and deeply supportive way, author Kate C. Wilde uses her decades of experience with children and adults on the spectrum to show you how to break through and finally enable your child to:  Begin speaking and communicating  Build their vocabulary…willingly  Expand sounds into words and words into phrases  Ask and answer questions  Construct their own original sentences (rather than simply repeating rote phrases)  Share their thoughts In addition, you’ll learn to effectively address your child’s echolalia, repetitious language, and repetitive questions (without scolding your child, stopping your child, or “doing battle” with your child) in a way that your child will find supportive, bonding, and even joyful.

Buy it on Amazon

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A Parent’s Guide to Helping Your Child Turn Sounds and Words into Simple Conversations

hat we Isn’t this w or our all want f ids? precious k

THERAPIES AND TREATMENTS

THE IMPORTANCE OF EARLY DIAGNOSIS of Autism Spectrum Disorder

By Zachary Ginder, PsyD, MSW

J.D. AND HIS PARENTS ARRIVED AT THEIR NEW PEDIATRICIAN’S OFFICE FOR THEIR FIRST VISIT SINCE MOVING ACROSS THE COUNTRY THREE YEARS AGO. THEY HAVE STRUGGLED TO FIND RESOURCES SINCE MOVING AND HAVEN’T BEEN CONNECTED WITH HEALTHCARE FOR A NUMBER OF YEARS. THEY DECIDED TO SCHEDULE AN APPOINTMENT WITH A PEDIATRICIAN AFTER NOTICING J.D.’S SPEECH AND COMMUNICATION ABILITIES WERE NOT AT THE SAME LEVEL AS OTHER CHILDREN HE HAD BEEN PLAYING WITH IN THE NEIGHBORHOOD.

H

is behavior had also become more noticeable since the pandemic. J.D. was their first child, and although very attentive and caring, their knowledge of child developmental milestones was admittedly lacking. During the pediatrician visit, a developmental screening tool was used to identify possible areas of developmental concern. After the visit, a referral for a specialized comprehensive evaluation was placed to help J.D., and his parents receive

the answers and assistance they need to support him in thriving as he transitions into school-based learning the following year.

While the above scenario is fictional, it describes an alltoo-common situation that does not always end with such optimal outcomes. According to the Centers for Disease Control—Autism and Developmental Disabilities Monitoring Network (ADDM), diagnostic rates for autism spectrum

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disorder (ASD) continue to increase within the United States (Maenner et al., 2020), yet there are scores of children and young adults who go undiagnosed each year.

There are a myriad of reasons why early detection, diagnosis, and intervention services may be delayed for children who eventually are diagnosed with ASD. These reasons can range from a previous diagnosis of another condition or disorder that masks the actual underlying issue, such as attention-deficit/hyperactivity disorder in relation to ASD (Kentrou et al., 2019), gender differences in the expression of “typical” autistic symptoms and the potential camouflaging of symptoms (Bargiela et al., 2016), caregiver hesitancy to seek help, and physician hesitancy to diagnose (Locke et al., 2020), among many others.

Naturally, parents and primary caregivers are often the first to identify developmental or behavioral concerns in their child; however, research suggests that unless there are pronounced concerns in language, communication, sensory-motor functioning, sensory seeking, or challenging behaviors, primary care physicians may take a “wait and see” approach to evaluation when parents initially express concern. This approach is not always without merit, as each child’s developmental trajectory unfolds specific to the child, meaning no two children will hit all developmental milestones at the same time (Locke et al., 2020).

First-time parents may also not be familiar with what functions their child should typically be able to perform by certain stages in their life. Additionally, caregivers may have limited access to healthcare services or be less trusting of Western medicine. The latter is particularly relevant for Latinx (Zuckerman et al., 2014) and African American families (Burkett et al., 2015), where limited access and historic distrust in healthcare have been found to result in delayed diagnosis and treatment services. Alternately, general pediatricians may have inadequate knowledge of how to assess for ASD and may, in turn, disregard initial concerns from parents (Locke et al., 2020).

Despite these barriers, one in 54 children are diagnosed with ASD by the age of eight within the United States. The diagnostic prevalence is relatively consistent across most racial and ethnic groups, and approximately one-third of all children diagnosed have a co-occurring intellectual disability. The median age of first diagnosis for those participating in the Centers for Disease Control—ADDM network was 4.25 years old (Maenner et al., 2020), although it should be noted research suggests ethnic minority groups are typically diagnosed later (Tromans et al., 2020) and often receive an alternate diagnosis, such as adjustment or conduct disorder, prior to receiving the most appropriate diagnosis of ASD (Mandell et al., 2007). This speaks to the broader health disparities and inequity present in healthcare for certain populations. The importance of ear-

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ly diagnosis and intervention services cannot be understated and is often vital in maximizing the lifelong functional outlook for autistic children. This process generally starts with a developmental observation and screening tool, such as the Modified Checklist for Autism in Toddlers (M-CHAT), the Ages and Stages Questionnaire (ASQ-3), or other standardized developmental screening conducted by a pediatrician or health professional at a well-child visit or annual appointment. Parents are encouraged to vocalize their concerns and be open regarding their child’s current abilities. Moreover, parents who have a family history of autism or other developmental concerns are encouraged to speak with their child’s pediatrician to schedule more frequent visits for their child (Zwaigenbaum et al., 2019).

If the pediatrician has concerns for autism, the next step is often a referral to a specialist group for a comprehensive evaluation. Unfortunately, not all comprehensive evaluations are equal. The American Academy of Neurology recommends a holistic view of the child that includes an

THERAPIES AND TREATMENTS

Because the brain develops rapidly and significantly in early life, treatment interventions during this window of opportunity are referred to as critical periods for plasticity (Voss et al., 2017). Research suggests that a specific type of intervention, known as experience-dependent interventions, can be associated with positive outcomes in increasing neuroplasticity in both neurotypical and neurodivergent groups, especially when focused on cognitive, behavioral, and sensory-motor abilities (Weyandt et al., 2020). These types of interventions can take the form of speech therapy, occupational therapy, and applied behavior analysis (ABA), among others.

evaluation of medical and neurological, cognitive, behavioral, speech and language, and sensorimotor and occupational components of each child (Filipek et al., 2000).

This gold standard in comprehensive evaluation provides the opportunity to identify underlying factors that in a less comprehensive evaluation may be overlooked and lead to misdiagnosis. After the evaluation process, diagnoses and referrals are typically made by the evaluating clinical team. As is the case with most health-related concerns, diagnosis informs the treatment.

Accessing treatment as early as possible is essential for bolstering child resiliency and may support inclusion later in life. While a lot can also be done to support late-diagnosed children and young adults, early detection and treatment provides an opportunity to take advantage of early life flexibility in the development of brain connections, known as neural pathways, to adjust and learn new ways of organizing thinking and interacting with the world. This flexibility is commonly known as neuroplasticity.

If the opportunity for improved skills in communication, motor function, cognition, behavior, and parental relationships were not reason enough to push for early evaluation (Jagan & Sathiyaseelan, 2016), researchers Berger, Rohn, and Oxford (2013) suggest there may be a shortened window for neuroplasticity and development for children with ASD. This finding underscores the critical nature of early and accurate diagnosis that leads to appropriate treatment interventions that take advantage of early life neuroplasticity for the betterment of each child.

Early treatment can also improve sensory tolerance, communication, functional skills, and motor skills, which, in turn, connect with overall improved life function. In short, we must all do our part to bring greater awareness to the importance of early detection and treatment to help each child reach their full potential.

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References Bargiela, S., Steward, R., & Mandy, W. (2016). The experiences of late-diagnosed women with autism spectrum conditions: An investigation of the female autism phenotype. Journal of Autism and Developmental Disorders, 46(10), 3281-3294.

Berger, J. M., Rohn, T. T., & Oxford, J. T. (2013). Autism as the early closure of a neuroplastic critical period normally seen in adolescence. Biological Systems, Open Access, 1.

Burkett, K., Morris, E., Manning-Courtney, P., Anthony, J., & Shambley-Ebron, D. (2015). African American families on autism diagnosis and treatment: The influence of culture. Journal of Autism and Developmental Disorders, 45(10), 3244-3254.

Filipek, P. A., Accardo, P. J., Ashwal, S., Baranek, G. T., Cook, E. H., Dawson, G., ... & Volkmar, F. R. (2000). Practice parameter: Screening and diagnosis of autism: Report of the Quality Standards Subcommittee of the American Academy of Neurology and the Child Neurology Society. Neurology, 55(4), 468-479.

Jagan, V., & Sathiyaseelan, A. (2016). Early intervention and diagnosis of autism. Indian Journal of Health & Wellbeing, 7(12), 1144-1148.

Kentrou, V., de Veld, D. M., Mataw, K. J., & Begeer, S. (2019). Delayed autism spectrum disorder recognition in children and adolescents previously diagnosed with attention-deficit/hyperactivity disorder. Autism, 23(4), 1065-1072.

Locke, J., Ibanez, L. V., Posner, E., Frederick, L., Carpentier, P., & Stone, W. L. (2020). Parent perceptions about communicating with providers regarding early autism concerns. Pediatrics, 145(Supplement 1), S72-S80.

Maenner, M. J., Shaw, K. A., & Baio, J. (2020). Prevalence of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States, 2016. MMWR Surveillance Summaries, 69(4), 1.

Mandell, D. S., Ittenbach, R. F., Levy, S. E., & Pinto-Martin, J. A. (2007). Disparities in diagnoses received prior to a diagnosis of autism spectrum disorder. Journal of Autism and Developmental Disorders, 37(9), 1795-1802.

Tromans, S., Chester, V., Gemegah, E., Roberts, K., Morgan, Z., Yao, G. L., & Brugha, T. (2020). Autism identification across ethnic groups: a narrative review. Advances in Autism.

Voss, P., Thomas, M. E., Cisneros-Franco, J. M., & de Villers-Sidani, É. (2017). Dynamic brains and the changing rules of neuroplasticity: Implications for learning and recovery. Frontiers in psychology, 8, 1657.

Weyandt, L. L., Clarkin, C. M., Holding, E. Z., May, S. E., Marraccini, M. E., Gudmundsdottir, B. G., ... & Thompson, L. (2020). Neuroplasticity in children and adolescents in response to treatment intervention: A systematic review of the literature. Clinical and Translational Neuroscience, 4(2), 2514183X20974231.

Zuckerman, K. E., Sinche, B., Mejia, A., Cobian, M., Becker, T., & Nicolaidis, C. (2014). Latino parents’ perspectives on barriers to autism diagnosis. Academic pediatrics, 14(3), 301-308.

Zwaigenbaum, L., Brian, J. A., & Ip, A. (2019). Early detection for autism spectrum disorder in young children. Paediatrics & Health, 24(7), 424-432.

Zachary Ginder, PsyD, MSW, has a lifelong passion for service to others that includes education, advocacy, and direct practice. He has had the honor of supporting and working with differently-abled populations throughout his career, as well as work within the education sector, early learning, youth, families experiencing homelessness, and families living with HIV/AIDS. Dr. Ginder is the Executive Director of the Inland Empire Autism Assessment Center of Excellence, a transdisciplinary group practice that provides the gold standard of comprehensive diagnostic evaluations for children and young adult populations.

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PARENTAL SUPPORT

It’s Time to Let Go:

I

The Many Ways Perfectionism Shows Up in Parenting

By Rebecca Jeffreys

WHEN I WAS IN FIFTH GRADE, WE WERE STUDYING FRACTIONS. THE TEACHER ASKED MANY OF US TO GO UP TO THE CHALKBOARD AND SOLVE ONE OF THE MATH PROBLEMS IN FRONT OF THE CLASS. THIS WAS A PRETTY NORMAL SITUATION FOR THE 1970S. HOWEVER, IT WAS NOT A COMFORTABLE SITUATION FOR MANY KIDS, MYSELF INCLUDED.

had been struggling to make heads or tails of fractions.

Trying to solve a problem in a public manner did not help with my anxiety. Nor did the teacher’s comment when he asked with much exasperation, “Why can’t you understand this?” In my fifth grade head, that translated into, “Why are you so stupid?” and set me up for math anxiety for the rest of my life. There are many lessons to be observed here above and beyond fractions:

•

No one likes to be put on the spot and asked to demonstrate a weak skill.

•

The teacher’s choice of words matters.

•

As an adult, our frustrations about our own weaknesses should not be put upon children whether or not they are our own children.

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Later in life, I became a mom, which in turn makes me another kind of teacher. In my experience, parenting is tough and rewarding, but difficulties are amplified when the child has special needs. This goal of avoiding public humiliation and not taking out your weakness on the student (now your child) is more important than ever and sometimes even harder to avoid. When I reflect back to that fifth-grade moment, I see the following emotions getting amplified in the teacher too: •

Perfectionism (the teacher wanted all of his students to be successful)

•

Shame (used as a tool to try and force the student to learn)

•

Guilt (feeling like he has failed his students or his own expectation as a teacher)

your kid to succeed at everything. You’d end up with a failure fest. Not only does this break your heart, it also breaks theirs.

Expecting perfection in your child is a toxic downward spiral.

Embracing your own realistic set of expectations and maybe even surpassing them will bring you all joy! Sometimes good enough is good enough and worthy of celebration! I love referencing this short poem to remind myself that holding on to perfectionism and unrealistic expectations can really be a huge limiter.

If you let go a little, you will have a little peace.

If you let go a lot, you will have a lot of peace.

If you let go completely, you will have complete peace.

—Ajahn Chah

Now that you are a parent, I want to take a moment to explore how these emotions impact your daily life and your decisionmaking.

Let’s start with perfectionism, or the overwhelming need to do everything correctly (even parenting). Firstly, I truly admire you if you do not consider yourself a perfectionist. Most of us have it to some degree and some of us (including me) have it to a severe degree. So how does perfectionism show up in parenting? It shows up in one’s self-expectations in both big things and little ones. For example, how do you feel when the kids’ clothes are not folded and put away, the bathroom is a mess, and you forgot to wash your hair, all on the same day?

Do you expect these things to be perfect at all times? Do you expect your home to look like a maid lives there or for you to appear as if you have a live-in hairdresser? If so, who is the one putting the pressure on you? I suspect you do it to yourself.

As a new mom, and for many years into motherhood, I wanted to do it all “right.” That’s how I always was. A great student, never late to anything, always looking my best. You get the idea. What I was really doing was holding on for dear life while trying to raise a son with autism. I did not want anyone to see me struggling or out of control. The day I missed a very important doctor’s appointment for him, I just about died of embarrassment and shame and disappointment in myself.

That moment was so telling. Now I can reflect and have a different perspective; I see I was my own worst problem. I was setting unreasonable expectations on myself, making it impossible to be in the moment, live without self-judgment, and just be a mom to my son. I had turned my son into a school project and I was going to ace it!

Can you identify moments when your desire for control through perfectionism is causing stress for you or your child? How can you approach this differently? Can you “let go” just a little bit to start? I held on so tightly that I was afraid the world would end if things were not perfect. Fortunately, I was really wrong!

Let’s look at one more place where perfectionism shows up in parenting: our expectations of our kids. If you have a kid with special needs, you must adjust your expectations and accept the typical goalposts of development, rites of passage into adulthood, and dreams for your kid will get completely shifted from the norm. Take a quick moment to think about how chronically disappointed you would be if you expected

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There is another ugly emotion that rears its head when we feel we have failed and shown weakness through our imperfections.

It is called shame. I bet right now, some of you can feel this in your gut. Embarrassment, low self-esteem, and maybe even depression—all markers you put on yourself because you performed less than perfectly. I see my son struggle with this every day. As a result of seeing my son struggle with this, he has helped me let go of the shame I used to assign to my mistakes.

I have seen how shame doesn’t serve anyone. However, if I take the mistake as an opportunity to learn, try again, and grow, I can find solace in my mistakes and embrace them as part of my human self. By doing that, my ego is a lot less bruised by the mistakes and does not chatter back at me with messages such as “You’re a loser, no talent, good-for-nothing.” Why would any of us be so hurtful to ourselves?

Can you see places in your thinking in which you assign shame?

How would you view yourself differently without it? You are worthy of self-love.

And finally, I want to look at guilt. Guilt is sneaky and will

PARENTAL SUPPORT

control your behaviors without you noticing. I’m sure you can think of a time when you needed help but were afraid to ask because you felt “guilty” and that your need was less than theirs. We’ve all done it! But there comes a time when the guilt and putting others ahead of our own needs as a mom has to stop. Feeling guilty about fulfilling your own needs turns you into a martyr, and no one needs a martyr. What your family needs is a rested and emotionally healthy mom, and that comes from guilt-free self-care. When we fill our cup first, we make better decisions, avoid snap decisions, choose

kind words, and can handle stress with eloquence. And that benefits everyone.

What are a few simple ways you can put yourself first? Can you ask someone else to take the dog out at night or assign chores to others? Can you get a few minutes alone each day or a scheduled time each week to do as you please? Selfcare doesn’t have to be complicated, but it does need to be a priority. You are worthy.

RESOURCES Cooking activity: https://abaspeech.org/2020/05/speech-therapy-ideas-for-students-with-autism-communication-at-home-cooking/ Reading activity: https://abaspeech.org/2020/06/speech-therapy-ideas-for-students-with-autism-communication-at-home-literacy/ Laundry activity: https://abaspeech.org/2020/06/speech-therapy-ideas-for-students-with-autism-communication-at-home-laundry/ Rebecca Jeffreys is an autism mom, and the author of You Were Made for This - Finding Courage and Intuition for Raising a Child with Autism. In her book, she shares encouragement and guidance for keeping a healthy mindset in motherhood.

Website: https://www.sproutinghealthyfamilies.com/ Facebook: https://www.facebook.com/acalmingguide YouTube: https://youtube.com/channel/UCUlOPEXdDZh5O1O_LKjRyhQ

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SENSORY STRATEGIES

NATURE NOTES

I am pleased to turn this column to landscape designer Julia Wilson, who also happens to have a minor in disability studies.

Julia is very interested in design projects that feature inclusivity at its core, and she completed her thesis on outdoor design for children with autism. Julia can be reached at: juliahvwilson@gmail.com.

Thank you, Julia, for preparing a wonderful article about nature bathing.

Nature bathing does not happen in a pool or bathtub! It can happen in your own backyard, a dedicated corner of your home, or in a local park. All that’s needed are some plants and about 20 minutes. By spending time in green spaces, you and your child may benefit from experiencing a reduction in negative emotions like stress and depression (Li, 2010; Park, 2010). In fact, studies have shown children with

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Nature Bathing:

autism who have regular interaction with green spaces typically demonstrate more positive, relaxed moods and better emotional regulation (Bradley, 2017; Larson, et al., 2018; Li, et al., 2018). Time in nature has also been shown to lower blood pressure and heart rate, so, as you might be thinking, the whole family can benefit from this health-promoting practice (Ideno, et al., 2017).

A Multi-Sensory Experience for Better Emotional Regulation

Through a “bathing” practice that grounds sensation in nature, you and your child can enjoy different multi-sensory experiences. This is important because our sensory systems play a role in everything we do in our lives, so why not involve them in nature bathing? You can do this by inviting your child to interact with plants as they best tolerate, to describe, or to describe for them, different plants they encounter as they “bathe” in any nature setting.

You can ask, “Which leaves are rough, and which are smooth?

What color are the flowers (leaves, bark, etc.)? What does it smell like?” You may even invite your child to shake the plant very gently if it is hardy, to hear what sound rustling leaves

By Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA make with movement. This is a good way to start incorporat-

SENSORY STRATEGIES

ing plants into any type of sensory routines you may already have. You can also take nature bathing to the next level by asking your child which plants they like the best and why they like it. This is an excellent way to learn about their preferences and include them in the process of one day building or expanding a garden that your whole household can enjoy.

Here are some practical ways you can implement nature bathing at home or in the community: OPTION 1: BACKYARD A backyard is accessible, familiar, and a controlled environment, making it a good starting point to introduce your child to nature bathing. Using raised bed planters and pots that are already planted, you can slowly acquaint your child with different plants. After spending some time exploring plants with diverse smells, textures, and appearances, if it is appropriate, think about designating a planting space in your backyard for your child to decide what to plant (provided the plants are safe and pose no health risks). It could be a separate planting bed or pot, whatever works best for you and your child.

Based on your child’s needs and skill level, the next step would be working with them to learn to tend and care for their special garden. This fosters not only a sense of responsibility for living things but also independence, as they will have control to make decisions about their space. If this level of responsibility is not on target for your child, activities like picking flowers and pressing them in old books to later be used for crafts projects or choosing one plant they like to observe throughout the seasons provide meaningful nature interaction. Other nature bathing backyard activities include laying a blanket down near some greenery and either sitting and looking at

the plants or laying down and listening to the sounds of the garden. When you get quiet, you see and hear so much!

OPTION 2: LOCAL PARK OR COMMUNITY GARDEN If backyards are not available, a local park can also be used to nature bathe, as most things you can do in your backyard can also be done at the park. Setting up a show and tell puzzle game is one activity you can do in a park, garden, or backyard.

With your child, collect some pieces of plants (guiding them so they don’t harm the local flora). You can collect plant pieces from right where you are or throughout the space, depending on your child’s interest level and ability. Together, talk about what parts of the plant you have found and how they come together, what each piece looks, feels, and smells like, while at the same time, “reassembling” the plant or leaf.

OPTION 3: INDOOR GREEN SPACES You can also nature bathe inside. This indoor green space can be a potted herb garden near a sunny window in the kitchen or any other place inside that gets at least six hours of sunlight per day. To prepare your indoor nature bathing, work with your child to spend a day or two observing the lighting in different areas, noting them “direct light,” which means the sun shines directly on the area without anything blocking it, or “indirect light,” which means that the light does not shine on the area directly and is typically partially blocked by either a tree or wall. Light can also change depending on the orientation of your home and the time of day. You can also get more detailed and note features in each potential planting area such as whether it is next to an air vent, which will make the area drier, or if it is next to a sink or shower, which would make it slightly more humid. These conditions will help you make the best choices of where to nature bathe. Then, after

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you determine the best places, get plants potted up and let the fun begin!

In the same way you offer your child a designated area to garden, giving them a specific houseplant to take care of or observe over time encourages them to learn more about one specific plant. In fact, this might be a good starting point before giving your child the bigger responsibility of their own outdoor garden, if that is an option and desired outcome.

To create a dynamic and flexible indoor nature bathing experience, trailing plants like pothos can be a nice experience for your child to walk or roll under or reach up towards and touch. Wall planters can maximize space efficiency but also be used to feature different textured plants as a mini green wall. With a wall planter, your child can practice reaching up to the top or to the side as you put in a request to “pinch off some parsley for dinner!”

Nature is healing and hopefully it can be something you can all take part in regularly. So, if you’re looking for something good for your child and the whole family, why not try some nature bathing?

References Bradley, K., & Male, D. (2017). “Forest School is muddy and I like it”: Perspectives of young children with autism spectrum disorders, their parents and educational professionals. Educational and Child Psychology, 34, 80–96.

Ideno, Y., Hayashi, K., Abe, Y., Ueda, K., Iso, H., Noda, M., Lee, J.-S., & Suzuki, S. (2017). Blood pressure-lowering effect of Shinrin-yoku (Forest bathing): A systematic review and meta-analysis. BMC Complementary and Alternative Medicine, 17. https://doi.org/10.1186/s12906-017-1912-z Larson, L. R., Barger, B., Ogletree, S., Torquati, J., Rosenberg, S., Gaither, C. J., Bartz, J. M., Gardner, A., Moody, E., & Schutte, A. (2018). Gray space and green space proximity associated with higher anxiety in youth with autism. Health & Place, 53, 94–102. https://doi.org/10.1016/j.healthplace.2018.07.006 Li, D., Larsen, L., Yang, Y., Wang, L., Zhai, Y., & Sullivan, W. (2018). Exposure to nature for children with autism spectrum disorder: Benefits, caveats, and barriers.

Health & Place, 55. https://doi.org/10.1016/j.healthplace.2018.11.005 Li, Q. (2010). Effect of forest bathing trips on human immune function. Environmental Health and Preventive Medicine, 15(1), 9–17. https://doi.org/10.1007/s12199008-0068-3 Park, B. J., Tsunetsugu, Y., Kasetani, T., Kagawa, T., & Miyazaki, Y. (2010). The physiological effects of Shinrin-yoku (taking in the forest atmosphere or forest bathing): Evidence from field experiments in 24 forests across Japan. Environmental Health and Preventive Medicine, 15(1), 18–26. https://doi.org/10.1007/s12199009-0086-9

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 access to nature and is co-author of the award-winning book Therapeutic Gardens: Design for Healing Spaces published

by Timber Press. When not designing gardens, researching, or developing garden and nature programs, Amy can be found happily digging in the dirt.

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

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EMOTIONAL HEALTH

The Neuroscientific Power of Touch and Massage

Embrace Your Daily D.O.S.E!

By Giuliana Wheater

As we all begin to finally emerge from what feels like the dark ages of lockdown and into a changed and changing world, we may have many conflicting emotions, thoughts, and anxieties. We had to transition very suddenly into a different version of normal and now we are trying to do the same but in reverse!

It can be baffling and confusing; there might be aspects you’ll miss and others that you feel anxious about facing again.

For those of us who are neurodiverse in a mainstream world, this is an even greater transition. For families, teachers, carers, and other professionals supporting those with neurodiversities, you might feel particularly trepidatious or fearful.

So, here’s the first massive sunbeam of light to help us all find our way through.

Whatever lies ahead as we move forward, YOU GROW YOUR OWN BRAINS. Yes, it’s absolutely true!

Brains stop growing physically at around the age of 18, but what we do with the grey matter inside them is under our control throughout our whole lives.

In other words, WE define US! We can grow or shrink grey matter around our amygdala/emotional brain (sometimes called the fear center), and we can grow or shrink it around the hippocampus (memory and learning) and our frontal lobe, which contains all those higher executive shiny brain functions. If we are stressed for prolonged periods or in flight or fight, the grey area around the emotional brain grows, and

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E—Endorphins, the neurotransmitters of pain relief and that euphoric feeling of well-being.

And that’s not all!

Did you know memory isn’t just carried inside your brains? We carry the day-to-day memory of how and who we are in our water (young children are made of 90% water, and this drops to about 75% during adolescence), and it’s carried in every single one of our 37.2 TRILLION CELLS. Touch, mindfulness, massage, acupressure, reflexology, yoga, mindfulness, and meditation all HUGELY boost the positive memories we carry, that positive way of “being.” Play therapy and any Positive Growth Mindset games/activities do the same. The key is to meet the child where THEY are at and not where you want them to be.

By feeling invited, by knowing they can change the insides of their brains (and yes, I share it with them all, however young), guess what happens next?

THE BRAIN MAKES A NEW NEUROLOGICAL PATHWAY As Rick Hanson, PhD proved, “What fires the brain wires the brain. Every day our MINDS are building our brains.”

In other words, what we tell our children is what they become.

And what we tell ourselves is what WE become. In a relaxed and playful state, a child only needs to receive the same positive message four to six times for a new neurological pathway to be formed.

it shrinks around the other areas, causing learning and judgment to be compromised.

Well, we can turn this around. Yes, us!

“How?” I hear you cry. Well, it’s all about getting your daily D.O.S.E—your “happy and coping chemicals.”

Let me explain:

D—Dopamine, the neurotransmitter of reward, focus, attention, concentration, and motivation.

O—Oxytocin, the neurotransmitter of love and nurture, stimulates emotional intelligence. We start flooding with it within 20 seconds of touch.

S—Serotonin, the neurotransmitter of happiness, confidence,

and self-esteem. Never has this been so needed. AND if you make enough serotonin, you then have enough to produce melatonin, the neurotransmitter of sleep, mood, and aggression.

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Touch is key to this. How can I utter this as we transition out of a pandemic? Touch boosts IMMUNITY, and we can self-massage anyway, which then leads to self-awareness, self-management, and self-regulation—more empowerment.

Since the controversial experiments on monkeys by Harry Harlow in the 1950-60s to the present-day leaders in the field such as Darlene Francis, Michael Meaden, and Tiffany Field, touch has been proven to ease stress, boost resilience, build bigger brains, better physical health, and significantly higher levels of emotional and social intelligence, as well as better trust and bonding.

EMOTIONAL HEALTH

Tiffany Field also carried this research into yoga and proved how breathing and the poses push up the dopamine and serotonin from the gut (90 percent of our serotonin is made in the gut). Our gut or second/enteric brain carries so much dopamine and serotonin it could actually run as an independent nervous system. It is also the seat of meltdown, so is a win-win!

Yoga also improves breathing, perspective, sleep, self-awareness, focus, attention, positivity, and calm.

Everything we need is inside us. We are deliciously complete jigsaws! Our MINDS build our brains, not the other way around.

It’s called Neuro (brain) Plasticity (being bendy). AND IT’S YOUR SUPERPOWER!

Giuliana Wheater is a published author, multi-awardwinning therapist, teacher, public speaker, and advocate.

She is the founder of Therapies for Special Needs and Rainbow Kids Touch Therapy, which has been recognized by the Children’s University. She is also the Charity Wellbeing ambassador for the autism charity AnnaKennedyOnline and the specialist panel member for the UK Indian Head Massage Community. She is the author of Indian Head Massage for Special Needs. Giuliana is proudest, however, of being mom to an autistic son who birthed this journey.

Website: https://www.therapiesforspecialneeds.co.uk/ Edited from: https://www.drsusannapinkus.com/embrace-your-daily-dose/

CP CONSULTING

CONNIE PERSIKE, MS, CCC/SLP SPEECH-LANGUAGE PATHOLOGIST

EDUCATIONAL / BEHAVIORAL CONSULTANT 608-333-4464 https://cpconsulting.us/

Individual Student Consultation Functional Behavioral Assessments Development of Positive Behavioral Support Plans Independent Educational Evaluations Speech-Language Assessments Professional Development Development of Data Collection Measures Staff Coaching and Modeling Social Skill Evaluations Programming Audits Online Professional Development Courses for Teachers & Paraprofessionals

Exceptional Needs Today | Issue 6 | 73

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EXCEPTIONAL NEEDS TODAY

SAFETY STRATEGIES

How to Prepare a Child with Exceptional Needs for a Hospital Stay

By Bea Moise, MS, BCCS

IN A PERFECT WORLD, SICKNESS WOULD NOT EXIST; IN AN ALMOST IDEAL WORLD, ILLNESS WOULD HAPPEN TO INDIVIDUALS WHO CAN UNDERSTAND WHAT IS HAPPENING TO THEM AND APPROPRIATELY ASK FOR HELP. HOWEVER, NEITHER OF THE TWO EXIST, AND CHILDREN WITH NEURODIVERSE BRAINS GET SICK, AND SOMETIMES THOSE SICKNESSES LAND THEM IN THE HOSPITAL FOR ONE NIGHT OR LONGER. As a mother of a child with autism, I have conversations with myself about how autism is enough, and nothing else should occur along with that. But the reality is sometimes dual diagnoses exist. Individuals with neurodiverse brains are sometimes diagnosed with co-morbidity, which means two things are happening together at the same time that are not identical. I have had the privilege of being able to help families with these co-occurring conditions. At times these issues are mental health and medical. With a child with limited ability

to understand medical health concerns, how can you explain what is happening?

PRACTICE AHEAD OF TIME Practice what you want to say to your child. Think about the message you are planning to convey and what emotional state you want to leave your child. The main reason for practicing is to prepare you. As the parent, you have to know about the personal bias that you harbor that your child will experience.

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SAFETY STRATEGIES

For example, when my son was younger, we had to take him to get an MRI. When the pediatrician explained the process of an MRI for a toddler, I started to experience a panic attack. As she described how the procedure would go, my body began to tense up, and I felt the physical responses of having severe anxiety about an upcoming event. I knew at that point I was not going to be the parent to take him. I knew my energy would be off, and I would probably set his anxiety off as well.

I tried practicing staying calm, but I could not be successful; therefore, we agreed my husband would take him. Knowing how you are going to respond is as important as the actual information you will present. If you practice ahead of time and discover you will not remain calm effectively, it is best to outsource this conversation.

SEE THE CHILD, NOT THE ISSUE When it comes to talking to children, you have to see them and see past the issue. Depending on the child you have, their level of comprehension will vary from child to child. A mistake parents make is they undermine how much a child can understand. Do not underestimate what your child can understand.

On average, children are constantly learning and adapting, and you will be surprised at what they can pick up from the environment by simply observing it.

I had a client with a child who had severe ADHD. This child would constantly move, and anytime the client wanted to say something to their child, they would ask them to stop pacing back and forth and listen because they felt like the child was not listening. The problem was the child was using all of their energy to be still and attend but had nothing left actually to listen and take in the information. I told them to allow this child to keep pacing. While the pacing was a distraction to the parents, it allowed the child to focus, significantly improving their communication. Unfortunately, the parents were too focused on the issue and did not see the child. Do not allow yourself not to see what your child can understand because you are too concentrated on the issue.

DEVELOPMENTALLY APPROPRIATE LANGUAGE Engage in a way the child will understand. Each individual has different levels of understanding; even when they have a developmental delay, each child is unique with how much they know and how much of spoken language they can process.

Consider using the language that your child understands and use communications tools such as storybooks, picture cards, television shows, music, movement, etc. to help get your point across.

ROAD/FIELD TRIP If at all possible, it will be of tremendous help if you can have a faux experience before the actual procedure. Taking the child to the environment and walking the process before the actual procedure help the child label what will happen.

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Beatrice (Bea) Moise, MS, BCCS, is a board-certified cognitive specialist, parenting coach, writer, and national speaker. She is the founder of A Child Like Mine, LLC, a company created for educating parents of children with unique behavioral and learning needs while giving them the tools they need to be successful at home. She is a respected and trusted parenting coach and consultant in Charlotte, NC, and surrounding areas. Her passion is helping parents of children with autism, ADHD, and other behavioral challenges.

Bea is frequently featured on WCNC Charlotte Parenting Today, and has been featured on People of Charlotte, Peace & Parenting, Dandelion Seeds Positive Parenting, and Ballantyne Magazine, providing tips for parents. Bea has written for PBS-Kids, AAPC-Publishing, PsychCentral, Charlotte Parent Magazine, Autism Parenting Magazine, Carolina Parent, and Scoop Charlotte. Bea has a Bachelor of Science in Psychology; also, she holds a Master of Science in Mental Health Counseling with a specialty of Applied Behavior Analysis. Bea and her husband have two children—Jacob, who is awesomely autistic, and Abby, who is simply marvelous!

Facebook: https://www.facebook.com/BeaMoise.M.S Instagram: https://www.instagram.com/achildlikemine/ Twitter: https://twitter.com/AChildLikeMine

EXCEPTIONAL ADVOCATE

Join

the Chronic Warrior Collective in Sending Holiday Cheer

By Dawn Veselka, RT(T) THE HOLIDAYS ARE A FESTIVE TIME WHEN FAMILY AND FRIENDS GATHER TO CELEBRATE. FOR THOSE LIVING WITH LONG-TERM ILLNESS, RARE DISEASE, DISABILITY, OR WHO REMAIN UNDIAGNOSED, THIS FESTIVE TIME OF YEAR OFTEN MEANS MISSING OUT ON THE FUN DUE TO A FLARE, COMPROMISED IMMUNE SYSTEM, UNEXPECTED HOSPITAL STAYS, OR OTHER ILLNESS-RELATED LIMITATION.

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EXCEPTIONAL ADVOCATE

A

ccording to the National Health Council, about 40 percent of all Americans (that’s more than 131 million) are living with chronic health problems, and another four percent (or 30 million) live with a rare disease, while approximately 25 million more people are still seeking a diagnosis. As you may know, living with a long-term illness comes with varying levels of symptoms that can make everyday life challenging. Because of this, it’s estimated that one in three individuals with a chronic illness will suffer from added depression, which is one of the reasons the Chronic Warrior Collective, a social network for individuals with long-term illnesses, started the card swaps. It’s an easy way to connect with new friends but is not time-consuming or physically taxing.

The Chronic Warrior Collective has been holding organized monthly card swaps since 2016. They began as a way to connect individuals with chronic illnesses with new friends and help them send some encouragement to each other. What started as 13 people swapping uplifting notes has turned into a group of more than 2,300 participants spanning across 27 countries.

While she couldn’t have predicted a global pandemic creating even more illness warriors and showing everyone a glimpse of what isolation can look like when she started the card swaps back in 2016, Denise Archilla, founder of the Card Swap, is thankful so many people are able to find support and positivity through her program now more than ever. “It’s brought me a tremendous amount of joy to have started something so small and simple and see how it continues to grow and impact the lives of those who are invisible and need it so desperately,” she says. “We have an incredible community!”

There is something powerful and exciting about opening your mailbox to find a card nestled in amongst the bills, insurance statements, and junk mail. And there is something equally as powerful about creating that card to bring hope and cheer to a fellow warrior! Having a way to do something for someone else is one of the greatest challenges of being a mostly homebound illness warrior, yet the Card Swap provides purpose and joy for all who are involved! For many illness warriors, the holidays present an even more challenging time where they often feel left out, even more isolated, alone, and like no one around them “gets it.”

Does this resonate with you? Do you love the holiday season and long to connect with others that understand a life disrupted by chronic illness, rare disease, or disability? We have the perfect remedy!

The Chronic Warrior Collective INVITES YOU to join their holiday-themed Card Swap!

This retro-style snail mail swap is the perfect way to spread holiday cheer from the comfort of your home. Whether you celebrate Christmas, Hanukkah, Kwanza, Winter Solstice, Sinterklaas, or a combination of them all, you will love being a part of

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this festive, annual holiday event!

Register by November 30th—the Card Swap begins December 1st Here’s how it works (Slideshow link): 1. Register for the Card Swap online before the end of the month (it’s free!)

2. Watch your email on December 1st and click the graphic that says, “Yes! I’m in! I am excited to send a card this month!” (As a registered participant, you will receive this email on the first of each month, giving you the option to participate when you feel up to it.)

3. Watch your email on the 5th when you find out who to send your card TO. (Remember: the person you send your card TO will not be the same person you receive a card FROM. This gives each participant two unique connections each month!)

4. Create your card and mail it by the 10th! It is extremely important to send your card on time so that no warrior is left feeling left out during the holidays!

5. Click the “Done!” graphic in the status update email that is sent out on the 10th of the month to let us know your card is in the mail.

Tip: Because we understand the unpredictability of the chronic lifestyle, we know unexpected occurrences (i.e., hospital admission) can prevent you from sending your card. Therefore, we have a Card Crew of volunteers who will step in and send a card to your match, making sure no one is left out. However, to activate this assistance, you must let us know by clicking the “Yikes! I need help,” graphic in the status update email on the 10th.

Words from warriors on what it’s like to send a card “It feels amazing! I love being able to brighten another warrior’s day to let them know that they’re not alone. It’s such a great feeling to feel listened to and validated, so I try my hardest to make others feel that way!”—Alex, USA

“It feels rewarding to know that I’m cheering someone up,

making their day, and giving them the support they need. Even though it’s a small act of kindness, I know I could be making a big difference in someone’s life.”—Fuchsia, USA Words from a warrior on what it’s like to receive a card “It simply feels AMAZING! It is the best surprise every month!

Usually, the mail is only bills and other crap. It is so nice to get such a heartfelt message in the mail. I love seeing all the different places the cards come from!”—Isabelle, USA

“It’s the most amazing feeling! I can’t describe how much

strength they give me! I made friends everywhere in the globe and you all send me cards right when I need them!”

—Madalena, Portugal

EXCEPTIONAL ADVOCATE

“I get so excited! I rip them open straight away and enjoy the little boost they give me. I feel less alone and glowing, and it feels comforting to be grateful.”—Melanie, UK Keep in mind that while the Card Swap for Warriors is an ex-

traordinary project, sometimes life gets in the way, and a few cards don’t get mailed on time. If your child or loved one has a tough time with anticipation or in not receiving a card, perhaps Postcrossing.com might be a good alternative for sending and receiving mail.

Resources

National Health Council: https://nationalhealthcouncil.org/wp-content/uploads/2019/12/AboutChronicDisease.pdf Cleveland Clinic: https://my.clevelandclinic.org/health/articles/9288-chronic-illness-and-depression

Dawn Veselka, RT(T) is the co-founder of ChronicWarriors.org. As a radiation therapist, she treated cancer patients for over 12 years.

After her daughter was diagnosed with chronic illness and rare disease at age four, Dawn became an advocate and champion of children with invisible illness. Chronic Warriors Org funds programs like the Warrior Card Swap that provide social-emotional support to those living with long-term illnesses worldwide. Dawn enjoys meeting new people, so please say hello!

Website: https://chronicwarriors.org/ WarriorCardSwap.com LinkedIn: https://www.linkedin.com/in/dawn-veselka-122b0918/

Exceptional Needs Today | Issue 6 | 79

EVALUATION AND DIAGNOSIS

What’s Involved in an ADHD Evaluation?

By Patrick LaCount, PhD

ATTENTION-DEFICIT/HYPERACTIVITY DISORDER (ADHD) IS THE MOST COMMON NEUROBEHAVIORAL DISORDER OF CHILDHOOD, OCCURRING IN APPROXIMATELY SEVEN TO EIGHT PERCENT OF CHILDREN AND ADOLESCENTS. BECAUSE OF THIS, SCHOOLS, PSYCHOLOGISTS, PEDIATRICIANS, OR OTHER PRIMARY CARE CLINICIANS WILL LIKELY WANT TO INITIATE AN EVALUATION FOR ADHD IF A CHILD OR ADOLESCENT PRESENTS WITH ACADEMIC OR BEHAVIORAL PROBLEMS AND INATTENTION, HYPERACTIVITY, OR IMPULSIVITY. BUT WHAT’S INVOLVED IN AN EVALUATION FOR ADHD? There are three key components to evaluating children and adolescents for ADHD: 1. SURVEYS FROM PARENTS OR GUARDIANS AND TEACHERS ABOUT SYMPTOMS A clinician will want to obtain symptom ratings from parents or guardians and teachers because symptoms have to occur in more than one setting for a diagnosis of ADHD. Parents or guardians and teachers also contribute unique perspectives. Parents or guardians know their child and their child’s history the best and can attest to how symptoms have developed over time. However, parents or

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guardians may not have as much knowledge about what levels of inattention, hyperactivity, or impulsivity is typical for a child. A lot of parents or guardians who come to me began to realize their child is struggling with attention when the child’s younger sibling has an easier time with following directions and staying on task than their older sibling. This is why symptom ratings from teachers are crucial. Teachers know a lot more about what is typical for a child at a given age because they see many more children who are the same age.

EVALUATION AND DIAGNOSIS

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EVALUATION AND DIAGNOSIS

2. SURVEYS FROM PARENTS OR GUARDIANS AND TEACHERS ABOUT IMPAIRMENT The focus of any good assessment (or treatment!) should be impairment—the reasons families seek out an evaluation or treatment in the first place! All mental health diagnoses and conditions are defined by symptom-related (in this case ADHD-related) impairment. Impairment among children and adolescents with ADHD often includes difficulty completing tasks and schoolwork, making and keeping friends, and behaviors at home leading to parent and family stress.

3. CLINICAL INTERVIEW WITH PARENTS OR GUARDIANS After a clinician gathers the above data, they will want to complete a clinical interview—a conversation between a clinician and parents or guardians to clarify symptoms, impairment, and the settings and situations in which the child is struggling.

This is also when alternative explanations are explored. A lot of stressors or disorders can manifest in a way that looks very similar to ADHD (e.g., learning-specific difficulties, depression, trauma, anxiety). For example, if a child shows consistent inattention symptoms during reading, it would be important for a clinician to ask questions to determine if the cause of these difficulties is ADHD, reading-specific problems, or both.

Some clinicians will incorporate additional neuropsychological testing (e.g., cognitive/IQ, executive functioning) and academic achievement testing. These can be helpful to get a more comprehensive picture of a child or adolescent’s learning strengths and weaknesses; however, they have not been found to improve diagnostic accuracy in most cases. A child or adolescent can sometimes be asked to report on their symptoms or impairment; however, reports of their own behaviors often differ from other observers because children tend to have limited insight into their functioning and adolescents tend to minimize their own problematic behaviors.

References American Academy of Pediatrics (2019). Clinical Practice Guideline for the Diagnosis, Evaluation, and Treatment of Attention-Deficit/Hyperactivity Disorder in Children and Adolescents. Pediatrics, 144(4), e20192528. https://doi.org/10.1542/peds.2019-2528 Pelham, W. E., Jr, Fabiano, G. A., & Massetti, G. M. (2005). Evidence-based assessment of attention deficit hyperactivity disorder in children and adolescents. Journal of clinical child and adolescent psychology, 34(3), 449–476. https://doi.org/10.1207/s15374424jccp3403_5 Thomas, R., Sanders, S., Doust, J., Beller, E., & Glasziou, P. (2015). Prevalence of attention-deficit/hyperactivity disorder: a systematic review and meta-analysis.

Pediatrics, 135(4), e994–e1001. https://doi.org/10.1542/peds.2014-3482

Patrick LaCount, PhD, is the director of Practical Psychological Services in Fort Collins, Colorado and specializes in the assessment and treatment of ADHD. Dr. LaCount completed his doctorate in clinical psychology at University of Wyoming, predoctoral residency at Duke University Medical Center, and postdoctoral fellowship at Seattle Children’s Hospital. In addition to providing psychological services, Dr. LaCount is passionate about disseminating the latest science to the ADHD community and is a research consultant for the How to ADHD YouTube channel.

Website: https://PracticalPsychServices.com Facebook: https://www.facebook.com/DrLaCount Instagram: https://www.instagram.com/drlacount/ Twitter: https://twitter.com/drlacount

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ARTICLE HEADER

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 InvesExceptional Needs Today | Issue 6 | 83 tors Services, LLC or its affiliated companies.

BEHAVIORAL HEALTH

Applied Educational Neuroscience Framework©: What It Is and Why We Need It Now More Than Ever Before

By Connie Persike, MS, CCC/SLP THE PAST 17 MONTHS HAVE BEEN DIFFICULT FOR EVERYONE. WHILE THERE HAVE BEEN MANY ADVANTAGES, SUCH AS THE ABILITY TO SLOW DOWN, SPEND MORE TIME WITH FAMILY, AND PROVIDE MORE OPPORTUNITIES TO RE-THINK OUR PRIORITIES, OUR SENSE OF SAFETY HAS BEEN TAKEN AWAY. IN ADDITION, FOR MANY, THEIR ABILITY TO SOCIALLY CONNECT WITH OTHERS HAS BEEN LIMITED.

F

urthermore, many have struggled with financial loss as well as illness or the death of loved ones. With these struggles and changes in society come chronic stress, trauma, and an increase in mental health disorders. According to the Centers for Disease Control and Prevention, from August 2020 until February 2021, the percentage of adults with recent symptoms of an anxiety or a depressive disorder increased from 36.4 percent to 41.5 percent (Vahratian & Terlizzi, 2021). In addition, according to a survey conducted by Ann & Robert Lurie Children’s Hospital of Chicago, 71 percent of parents reported the pandemic

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had taken a mental health toll on at least one of their children.

Therefore, as we begin yet another school year with COVID-19 numbers rising once again, we need to create school environments that are trauma-sensitive, safe, and relationship-driven for both students and staff. Familiarizing yourself with and utilizing the Applied Educational Neuroscience© framework can provide a road map for staff and administrators to do so.

The Applied Educational Neuroscience© (AEN) framework was developed by Dr. Lori Desautels who offers a one-year certification through Butler University to increase awareness and

BEHAVIORAL HEALTH

implementation in schools, districts, and communities around the nation. This trauma-responsive framework includes four pillars that support current relational and brain science. The four pillars consist of the following: educator brain and body state, co-regulation, touchpoints, and teaching students and staff about their brain and body states. The framework begins with adult’s brain regulation.

check-ins with the adults in the building as well as teaching them brain-aligned, focused attention practices that will assist with regulation. In addition, this pillar concentrates on teaching adults to check in with their bodies frequently to notice sensations and name their bodily states and feelings.

When we name our feelings, we tame them (Siegel & Bryson, 2016).

Emotions are contagious (Sigal, Constantinos, Coutifaris & Pillemer, 2018). In order for students and children to be regulated and feel safe, we must begin with a focus on the teachers and staff supporting them. A dysregulated adult cannot regulate a child. In addition, we know that the best way to teach students social-emotional competencies is by modelling them ourselves; it is a powerful teaching tool.

When using this framework as a discipline lens to address behaviors that interfere with learning, staff are taught to check in with themselves prior to addressing student behavior. Oftentimes the adult’s nonverbal communication and body language can escalate a situation versus help de-escalate a situation. Lastly, this pillar of the framework teaches staff to think deeply and reflect on their own triggers. What situations or experiences can cause dysregulation in their brain and body? Knowing these situations is invaluable to adults who are working with children. With awareness, staff learn to name their triggers and utilize strategies such as breath, movement, and rhythm to regulate themselves.

THE FIRST PILLAR: EDUCATOR BRAIN AND BODY STATE The educator brain and body state pillar focuses on supporting staff by providing them with time for connection and regulation throughout the day. Connection and regulation can be created by building resiliency teams within buildings not only for students but for adults as well, by providing frequent

THE SECOND PILLAR: CO-REGULATION Co-regulation, which is the second pillar of the AEN© framework, is defined as warm and responsive interactions that provide others the support, coaching, and/or modeling needed to understand and modulate their thoughts, feelings, and behavior (Murray et al., 2015). This pillar focuses on teaching educators to create safety for students through connection and relationships, both with adults and peers in their environment. It teaches the adults to be aware of their nonverbal communication in order for students to see them as safe and caring adults. Nonverbal communication represents two-thirds of all communication, with some research stating that 93 percent of all meaning in a social situation comes from nonverbal information, while only seven percent comes from verbal information. All students’ brains will read the body language of adults at a subconscious level. Threatening body language will activate a student’s feelings portion of the brain because its job is to keep students safe. This will keep a student escalated or push them into the fight/flight pathway. The way your face and body look and sound will literally change someone’s brain! Within this pillar we also focus on movement by providing all students with proactive movement activities to calm their nervous system. Lastly, we explore the power questions can have when used collaboratively and during moments of regulation to learn from and reflect on previous experiences as well as repair negative outcomes previous experiences may have had.

THE THIRD PILLAR: TOUCHPOINTS Touchpoints are the third pillar within the AEN© framework.

Touchpoints are targeted and intentional interactions with students initiated by adults throughout the school day. They are brief in nature, lasting between 30 seconds to five minutes. Touchpoints are positive in nature with a focus on what is going well by noticing and affirming student strengths, in-

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terests, passions, belief systems, and culture. Touchpoints help students build resiliency, learn lessons about feelings of despair and hopelessness, and better engage with academics and the people they encounter in school. These touchpoints are embedded into rituals, procedures, and transitions during the school day (Fisher, Frey, & Hattie, 2020; Desautels, 2018).

THE FOURTH PILLAR: TEACHING STUDENTS AND STAFF ABOUT THEIR BRAIN AND BODY STATES The last and final pillar within the AEN© framework targets teaching students and staff about their brain and body states.

They learn about neuroanatomy, their autonomic nervous system, and how their brain and body work together. Students and staff alike are taught that all bodily states are okay; there are no “good” or “bad” emotions or bodily states. We all fluctuate through bodily states and emotions throughout our day.

When utilizing the AEN© framework, the focus is on awareness—awareness of our sensations and what that means

about our bodily states and the emotions we are experiencing. Teaching centers around the fight/flight/freeze response and how our autonomic nervous system is our superpower keeping us safe and helping us connect with others. Focused attention practices, movement, rhythm, and brain-aligned activities are taught as ways to help us regulate and calm our nervous system. These strategies and tools are embedded into daily routines and procedures.

As we start another school year during these uncertain times, it is essential we create safe environments for both our staff and students. We can do this by creating trauma-sensitive environments that focus on relationships and social-emotional learning. Learning more about AEN© and utilizing the framework as a roadmap to help you navigate these uncertain times will help you in this endeavor. For more information about the AEN©, you can visit Dr. Lori Desautels’ website, Revelations in Education.

References Vahratian A, Blumberg SJ, Terlizzi EP, Schiller JS. Symptoms of Anxiety or Depressive Disorder and Use of Mental Health Care Among Adults During the COVID-19 Pandemic—United States, August 2020–February 2021. MMWR Morb Mortal Wkly Rep 2021;70:490–494. DOI:.

Murray, D.W., K. Rosanbalm, C. Chrisopoulos, & A. Hamoudi. 2015. Self-Regulation and Toxic Stress: Foundations for Understanding Self-Regulation From an Applied Developmental Perspective. OPRE Report #2015-21.

Children’s Mental Health During the COVID-19 Pandemic. Retrieved from https://www.luriechildrens.org/en/blog/childrens-mental-health-pandemic-statistics/ Sigal G. Barsade, Constantinos G.V. Coutifaris, Julianna Pillemer, Emotional contagion in organizational life, Research in Organizational Behavior, Volume 38, 2018 Siegel, D., & Bryson, T. (2016). No-drama discipline. Pesi Publishing & Media.

Fisher, D., Frey, N., & Hattie, J. (2020). The Distance Learning Playbook Grades K-12 (1st ed.). Corwin.

Desautels, L. (2018). Connections Go a Long Way for Students With Trauma: Initiating short personal interactions may help students cope with adverse childhood experiences. Retrieved from https://www.edutopia.org/article/connections-go-long- way-students-trauma

Connie Persike, MS, CCC/SLP, is a highly experienced speech language pathologist and educational consultant. As founder of CP Consulting, Connie brings over 20 years of experience in educational settings to provide insight, guidance, coaching, and support to school districts, agencies, and families across Wisconsin needing expert direction in working with children.

In addition to running her business, Connie has taught part-time at the University of Wisconsin-Madison as a Clinical Associate Professor in the Communication Sciences & Disorders Department. Connie is a member of the American Speech Hearing Association, the Association of Supervision and Curriculum Development, and the Autism Society of Wisconsin.

Connie holds a certificate from Edgewood College’s Instructional Coaching Credential Program, The Positive Educator Certification Program through the Flourishing Center, and Butler University’s Applied Educational Neuroscience© Certificate Program. Furthermore, she is a published writer for Autism Parenting Magazine and Exceptional Needs Today magazine. Connie resides in Waunakee, WI with her husband and daughter. During her free time, she enjoys spending time with her family, reading, landscaping, decorating, and cooking.

Website: https://cpconsulting.us/

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