Exceptional Needs Issue 2
T O D AY
ALL VOICES
NEED TO BE
HEARD SIENA CASTELLON AND THE RISE OF
TOP TIPS FOR TOILET TRAINING CHILDREN WITH DIFFERENT ABILITIES LET NONSPEAKERS “SPEAK” INTO THEIR OWN LIVES
Sensory-Smarts to Aid Mental and Emotional Health
WI NN AN IN BA X I E G T H TT TY E LE
What Every Gifted Student Wishes Their Parents Knew About Them
AUTISTIC VOICES
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
Contents
March 2021, Issue 2 10
SIMPLE ACTIVITIES TO HELP PROVIDE PHYSICAL TOUCH WHEN KIDS ARE OVERWHELMED BY SENSORY STIMULATION
Springbrook Autism Behavioral Health Team Discover easy ways to express love and affection when a child is touch-resistant due to sensory processing disorders.
12
FINDING WHAT WORKS AND HOW TO STICK TO A SCHEDULE WITH SPECIAL NEEDS
Jake Edgar, Director of Special Education, and Jordynn Frollo, BCBA Discover the importance of consistency in maintaining schedule expectations when using them to prompt or assist your child.
15
IEP SEASON: FIVE THINGS TO FEEL COMFORTABLE ABOUT WHEN HEADING INTO THAT MEETING Chris Abildgaard, LPC, NCC, NCSP
Use these professional tips to help remove the stress and enhance your next Individualized Education Program meeting.
18
HOW TO ADVOCATE FOR YOUR AUTISTIC CHILD BEYOND THE ASD COMMUNITY Rebecca Lake
Follow these guidelines to help avoid alienating others when supporting your differently-abled child.
07 THE RISE OF AUTISTIC VOICES: THE TIME HAS COME FOR US TO BE HEARD Siena Castellon
Meet a young woman who campaigns for disability self-advocacy and autonomy, pointing out how society currently favors non-disabled voices even on disability topics.
22 NATURE NOTES KEEPING THE CHILDREN’S OUTDOOR BILL OF RIGHTS INCLUSIVE Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA
Find out what a children’s outdoor bill of rights includes and which states have successfully implemented them.
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SENSORY-SMARTS TO AID LONG-TERM MENTAL AND EMOTIONAL HEALTH Rebecca Duvall Scott
Learn how to guide your child to tackle life’s challenges by managing the nervous system through diet, therapy, and social support.
25 DEVELOPING COMMUNICATION SKILLS…PUT A SPEECH THERAPIST ON YOUR TEAM Karen Kaplan
Discover the value of adding a qualified speech therapist to your child’s professional support team.
28 WINNING THE ANXIETY BATTLE James L. West, MA, LMHC, NCC, and Christopher Williams, BS
Do you experience physically intense anxiety or feel nervous for extended periods? Read on for an overview of types of anxiety and natural treatments that may help.
30 A FIRSTHAND ACCOUNT TO USING YOUR GIFTS TO FIND THE RIGHT CAREER Sydney Holmes
An autistic graduate student explains how nurturing a child’s special interests can allow them to develop skills and passions that could lead to or assist in their future career.
33 WAYS YOU CAN USE THE SENSE OF SMELL TO IMPROVE COMMUNICATION AND SOCIAL SKILLS Ruth Sutcliffe
Learn how carefully-selected scents can trigger strong emotions and memories and ways parents and therapists can use them to improve recall, guessing or conjecture, comparisons, or social interaction.
36 LIFE-LONG SUPPORTS TO LIVE INDEPENDENTLY WHEN THERE ARE SPECIAL NEEDS Ryan F. Platt, MBA, ChFC, ChSNC, CFBS
Discover the importance of understanding government benefit rules and how to structure the process of planning for your child with autism’s lifelong supports.
38 LET NONSPEAKERS “SPEAK” INTO THEIR OWN LIVES Noah Seback
Hear directly from a nonspeaking man on the liberating effects of helping people find appropriate assistive or alternate communication methods.
40 THE AMAZING WAYS MUSIC THERAPY BENEFITS EVERYONE JC Ellinger
Appreciate the multitude of ways music proves psychologically and physiologically helpful for all people.
43 EXCEPTIONAL BOOKS
Diana Romeo provides an epistolary look into a mother’s raw, honest experience raising her autistic son.
44 FITNESS ANYWHERE: EXCELLENT HOME-BASED PROGRAMS FOR THE SPECIAL NEEDS COMMUNITY Eric Chessen, MS
A professional shares knowledge and advice on starting and personalizing exercises for autistic individuals through progressions and regressions.
48 ENGAGING, EQUIPPING, AND ENCOURAGING THE NEURODISTINCT AUTISTIC ADULT
J. David Hall, MDiv and Marcelle Ciampi, MEd
Learn how NeuroGuides respectfully and understandingly offers life and job coaching and helpful consultations to autistic individuals and their families.
51 ENSURING PROPER DIET AND NUTRITION FOR CHILDREN WITH SENSORY SENSITIVITIES Eileen Wissell, MPH, RDN/LD
Learn great ways to encourage your child to overcome food aversions and eat well.
53 EXCEPTIONAL PRODUCTS AND TOOLS
Learn about a subscription service called Autism Fitness® Toolbox and Pac+ that provides access to the PAC Profile and other services intended to help autistic individuals create their ideal exercise plans.
54 WHAT EVERY GIFTED STUDENT WISHES THEIR PARENTS KNEW ABOUT THEM Ron I. Malcolm, EdD
Find out why gifted children need parental support along with 10 specialized points to keep in mind when raising an advanced student.
58 EVERYTHING YOU WANTED TO KNOW ABOUT INTELLIGENCE TESTING THAT NO ONE WOULD TELL YOU Marcia Eckerd, PhD
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 Advertising Manager: Laurie Paskman Professional Consultants Chris Abildgaard, LPC, NCC, NCSP 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
Read on for a comprehensive guide to understanding IQ test scores, so you can get the most out of the information they offer.
61 AUTISM: WHEN THE IMPOSSIBLE BECOMES POSSIBLE Julie Hornok
A mother shares her difficult but loving journey of helping her autistic daughter become capable of more independent living.
63 KATE MAKES IT GREAT! KATE’S TOP TWO TIPS FOR TOILET TRAINING CHILDREN WITH DIFFERENT ABILITIES Kate C. Wilde
Kate offers excellent guidance on potty training and teaching interoceptive awareness to your child.
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 2 | 5
From the Editor’s Desk
A
friend recently asked me why I formed a magazine centered on exceptional needs. Why didn’t I focus on a single diagnosis, such as Down syndrome, cerebral palsy, or autism, he asked. How will readers relate to one another? While every person’s journey is unique, countless ambitions are parallel. At Exceptional Needs Today, we are driven to serve a strong and passionate community that shares a key objective—to ensure ALL people are accepted, respected, and included, and perhaps most importantly, ensure ALL voices are heard. Eighteen-year-old Siena Castellon, internationally renowned neurodiversity advocate and founder of Neurodiversity Celebration Week, works for all kids to be celebrated and empowered. A huge proponent of recognizing students’ strengths and talents with special educational needs, Siena has won multiple awards, including Campaigner of the Year at the 2019 European Diversity Awards, and was a finalist for the 2020 Children’s International Peace Prize. According to Siena, who describes herself as autistic with dyslexia, dyspraxia, and ADHD, society currently favors non-disabled voices even on disability topics. In her piece, The Rise of Autistic Voices: The Time Has Come for Us to Be Heard, Siena explains how people’s rights are often overlooked, even in a time when social justice and inequality are at the forefront of people’s minds. “While most minority and under-represented groups get a seat at the table, we are seldom allowed in the room,” she says. Siena’s perception and response to inequities are inspirational. We are also thrilled to feature the wisdom of Noah Seback in this issue. A self-described nonspeaking autistic who gained the ability to communicate effectively through spelling on a letterboard/keyboard five years ago, Noah is a rising self-advocate passionate about promoting communication rights. Be sure to read his piece, Let Nonspeakers “Speak” into Their Own Lives, as 21-year-old Noah explains the liberating effects of helping a nonverbal child gain their voice. His article is sure to broaden perspective and change lives. Do you or someone you love experience intense or continuous anxiety? Please know you are not alone, and support is available. As James L. West, MA, LMHC, NCC, and Christopher Williams, BS, of Total Life Counseling explain in their article, Winning the Anxiety Battle, angst is a normal response to stressful and threatening situations. However, when an intense response continues after the stimulus of the stress event ends, and it becomes a disabling response to everyday situations, it’s time to seek help. Diagnosing and treating anxiety disorders is crucial as they can be followed by secondary issues such as depression, substance abuse, impaired relationships, and low self-esteem. Be sure to read this valuable guidance as the authors distinguish anxiety disorder from everyday anxiety and
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advise on various therapies and natural treatments. How do you feel when your child’s Individualized Education Program (IEP) annual review meeting begins? Are you prepared and confident? Or are you overwhelmed? Chris Abildgaard, LPC, NCC, NCSP, owner and director of the Social Learning Center, says IEP meetings are stressful for both families and educators right now, especially after many schools moved to at-home learning. After attending thousands of IEP meetings remotely during the pandemic, Chris has put together his professional tips for us in IEP Season: Five Things to Feel Comfortable About When Heading into That Meeting. Reaching your child’s educational goals is paramount. When appropriate, he suggests asking older kids to be a part of the process to develop an understanding of their strengths and areas of need. What an excellent opportunity this would be to communicate and grow with your child. This issue is brimming with expert advice, including information on how to interpret intelligence testing, the benefits of adding a speech therapist to your child’s professional support team, and ways to aid long-term mental and emotional health. We also have articles focused on the fantastic ways music therapy benefits everyone, what every gifted student wishes their parents knew about them, and how to advocate for your child without offending parents of neurotypical children. We even have a firsthand account on ways to use your gifts to find the right career, written by a young autistic woman. We have been thrilled with the response to our new magazine. You will want to follow our regular columnists in 2021 to include Ryan F. Platt, MBA, ChFC, ChSNC, CFBS, Kate C. Wilde, and Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA. Be sure to check out our Exceptional Books and Exceptional Products and Tools sections as well! Let’s continue to support and empower one another. Let’s make sure every voice is heard.
Amy KD Tobik
Editor-in-Chief, Exceptional Needs Today Publisher, Lone Heron Publishing
PLEASE JOIN OUR EXCEPTIONAL COMMUNITY
MY WORD
The Rise of
Autistic Voices:
The Time Has Come for Us to Be Heard
By Siena Castellon
T
he voices of the autistic community are rarely heard. At a time when social justice and inequality are at the forefront of humanities’ collective consciousness, the rights of autistic people are still being ignored. While most minority and under-represented groups get a seat at the table, we are seldom allowed in the room. To the extent we are heard, others paternalistically speak for us, convinced they know best. Speaking on our behalf denies us agency. It also leads to the rise of ableist agendas that undermine the autistic community, such as focusing on autism cures that do nothing to increase the quality of our lives. However, the autism rights landscape is not all gloom and doom. There are glimmers of hope and signs the winds of change are blowing. As more of us raise our voices and come out of the shadows, our self-advocacy is finally beginning to be heard.
While neurodiversity awareness initiatives are becoming more widespread and mainstream, the movement still has a long way to go. There is still a corrosive stigma and deeply rooted prejudices towards people who are autistic. Just like the Black Lives Matter movement has highlighted the prevalence and pervasiveness of institutional and societal racism, a similar collective movement is needed for autism, learning disabilities, and disability rights more generally. Without a societal awakening to our plight and suffering, our rights will continue to be side-lined and remain on the periphery of society’s moral imperative. The first step towards accepting autistic rights is for society to adopt the social model of disability. This world view acknowledges what makes someone “disabled” is not their medical condition but the prejudicial attitudes and barriers imposed
Exceptional Needs Today | Issue 2 | 7
MY WORD
I recognize the autism community cannot achieve equality on its own. Each and every member of our community has a valuable role to play in bringing about autism acceptance and equality. However, while it is important to have allies and to join forces with non-disabled people, these alliances are not without peril. on us by our society. The social model separates impairment from disability and, by doing so, opens a world of possibilities. Whereas an impairment is a characteristic or long-term trait resulting from an injury, disease, or condition, disability is the attitudinal or physical barriers that make life harder for disabled people. It is vital to separate the two, so our impairments are not used as a justification to deny us autonomy. The social model aims to remove the attitudinal and physical barriers that prevent disabled people from being independent and having control over how they live, work, and access services. Unfortunately, the vast majority of society still views disability from a medical perspective. The medical model views impairment as a reason to exclude, ignore, and infantilize disabled people. Since the medical model dominates, most societal, political, and organizational decision-making is influenced by the belief that disabled people lack the ability to advocate or speak for themselves. It is this dominant world view that’s holding back autism inclusion and equality. I am bombarded with the hindering medical view of disability daily. Since many people still believe females can’t be autistic, my autism diagnosis is frequently questioned. I’m told I don’t “look” autistic or that I don’t act like someone who is autistic. My personal favorite is when I am told I must have a very mild form of autism because I appear normal. These prejudicial attitudes based on male stereotypes and ignorance are a reality
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I have to live with on a daily basis. Just because my crippling social anxiety caused by years of autism-related bullying or my sensory overloads that impair my quality of life aren’t on public display for everyone to see does not make my disability any less debilitating or valid. The medical model reigns even in places where you would expect to have sanctuary, such as an autism and learning disabilities charity’s awards dinner. Along with four other candidates, I was shortlisted for an award that highlights the accomplishments of disabled youth. As I read the brochure featuring a short biography of each of the candidates, I couldn’t help but notice one of the candidates was not disabled. But what especially stood out was that her biography highlighted her experience of having a disabled brother and how this motivated her to become “the voice” for disabled youth. Call me cynical, but the use of disability savior language and the over glorification of her altruism assured me she had won. You see, society likes to extol disability advocacy by non-disabled individuals over recognizing the advocacy and voices of the actual disabled community. People who support and provide services for us are immediately seen as altruistic and selfless, something to be rewarded and celebrated. Whereas disabled individuals advocating for themselves and their larger community are often overlooked, dismissed, and unseen, even though this advocacy usually takes a huge toll on our physical and mental health.
MY WORD
the disabled community did not include or listen to disabled people. We were marginalized, silenced, and denied a role in forging our own paths. A new relationship must be forged that rejects the medical and paternal model that infantilizes us. Instead, we must be treated as equals. Our voices must carry weight, and we must be given positions of leadership and power so we can take charge of our destinies. Until we are heard and until we are seen, very little will change. When I was growing up, there were no prominent autistic role models other than Dr. Temple Grandin. On the contrary, I grew up with the societal message that autism is a tragedy and a burden, something to hide and be ashamed of. I was told it is a disease that needs to be cured. I was told my life was not worth living and I would never accomplish anything. This narrative must change. Some of the greatest contributions and scientific discoveries that have revolutionized the way we live our lives were made by autistic people. If we are given appropriate support and our strengths and talents are nurtured, we have unlimited potential.
The fact an award intended to recognize the accomplishments of disabled youth was given to someone who is not disabled but speaks on behalf of the disabled community sent a strong message to the shortlisted candidates who were disabled. It reminded us our voices, contributions, and lived experiences carry less weight and value. It is easy to talk about how hard it must be to be disabled from an imagined perspective. It is much harder to carry out your advocacy while being burdened with the heavy weight of your disability while having to fight through physical discomfort and pain. It is much harder to share your raw lived experiences of abuse, discrimination, and rejection. Instead, the awards ceremony celebrated white knights who are seen as selfless rescuers while relegating us to second class citizens at an event that was supposed to empower and recognize the achievements of disabled individuals. I recognize the autism community cannot achieve equality on its own. Each and every member of our community has a valuable role to play in bringing about autism acceptance and equality. However, while it is important to have allies and to join forces with non-disabled people, these alliances are not without peril. Historically, organizations created to support
I am hopeful change is on the horizon. The United Nations recently selected me out of 7,000 international applicants to be a Young Leader for the Sustainable Development Goals (SDGs). I am collaborating with the United Nations to address the inequalities faced by the neurominority community and to work on projects that amplify our voices and advance our rights. Having a global platform on which to share my lived experience and through which to advocate for autistic rights has given me the ability to continue to change the way society views autistic people and the disabled community. I am using my role to shine a spotlight on the many young autistic advocates around the world who are tirelessly paving the way to equality, so future generations of autistic youth are not held back by their disability. In 2020, the Centers for Disease Control and Prevention (CDC) reported that one in 54 children in the United States is autistic—a conservative estimate that does not reflect the significant under-diagnosis of autism in girls and women. The time has finally come for us to smash the stigmas, stereotypes, and prejudices that have enchained us. The time has come for our human rights to be recognized and accepted and for us to be treated as equals. Future autistic generations are counting on us to lead the way to a better tomorrow.
Siena Castellon is 18 years old and lives in the United Kingdom. She is autistic and has dyslexia, dyspraxia, and ADHD. Siena is a multi-award winning internationally recognized neurodiversity advocate and founder of Neurodiversity Celebration Week, an international campaign that encourages schools to recognize the strengths and talents of students with special educational needs. Siena is the bestselling author of The Spectrum Girl’s Survival Guide: How to Grow Up Awesome and Autistic. She has won many awards, including Campaigner of the Year at the 2019 European Diversity Awards, and was a finalist for the 2020 Children’s International Peace Prize. Websites: www.SienaCastellon.com, www.Neurodiversity-Celebration-Week.com Instagram: https://www.instagram.com/qlmentoring/ Twitter Handles: @QLMentoring, @NCWeek
Exceptional Needs Today | Issue 2 | 9
SENSORY STRATEGIES
Simple Activities to Help Provide Physical Touch When Kids are Overwhelmed by Sensory Stimulation
By Springbrook Autism Behavioral Health Team
P
hysical touch is a basic human need for everyone, including children with autism—even children who have sensory processing disorders and may be defensive against touch. Touch is a natural instinct that provides emotional security. It’s also the easiest of the five love languages1 to use unconditionally, which means using physical touch strongly telegraphs: “I love you!” On the other hand, failing to touch your child shouts just as strongly: “I don’t love you!” Clearly, this can put parents into a no-win situation if their child avoids touch altogether or is reluctant to allow it. Even with a touch-defensive child, there are ways to communicate love through physical touch.
How to tell if physical touch is your child’s love language Is it even possible for a child who is touch-resistant to have physical touch as a primary love language? Absolutely! Being
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resistant to touch is typically a purely physical response due to a sensory integration or sensory modulation issue. Physical touch as a love language, however, fills an emotional role for your child, separate from the physical response. Certain kinds of touch may actually be distracting, upsetting, or even painful to your child, but that doesn’t mean your child doesn’t need touch. Here are a few clues that suggest physical touch may be your child’s love language: • Your child asks for or seeks out hugs or likes to cuddle Often, children who shy away or push you away when you try to hug them will find ways to hug you instead. When you are hugging your spouse, does your child try to get in the middle of the hug? Does your child like to cuddle with a blanket or a favorite stuffed animal? These are signs your child expresses love through touch.
SENSORY STRATEGIES
In addition to using sensory integration therapy and other occupational therapies to help your child build up a tolerance for being touched, there are ways you can include touch in your child’s daily routine without causing a meltdown or flooding the senses.
• Your child likes physical games, roughhousing, or contact sports With autism, it’s all about the kind of touch the child is seeking. Some children who don’t like hugs or cuddling love roughhousing. Children who love contact sports or who like to play rough, wrestle, or crash into things are often looking for a less emotional way to add more touch into their daily routines. • Your child likes holding your hand This is a very simple way to express love or the need for additional security and doesn’t require as much contact as an embrace. • Your child likes backrubs, back scratches, or hair brushing A lot of kids hate being touched on the back or having their hair brushed. Children who seek out this kind of interaction are very likely to have physical touch as their primary love language.
Activities that provide physical touch without overwhelming your child Almost all children with autism have some resistance to touch or are, at the very least, easily overwhelmed by sensory stimulation. In addition to using sensory integration therapy and other occupational therapies to help your child build up a tolerance for being touched, there are ways you can include touch in your child’s daily routine without causing a meltdown or flooding the senses. We tend to think of physical touch as highly emotionally-charged, full-body embraces, but that doesn’t have to be the case. As with all new experiences you are adding to your child’s routine, start small, experiment to find out what works best for your child, and have patience. Here are a few creative ideas to help you add touch to your child’s daily routine: • Sit close together. The warmth of your presence nearby is often enough to give easily stimulated children the physical touch they crave. • Pat back/shoulders. A gentle squeeze or massage is affectionate without being overwhelming to your child. • Play Twister. Make physical interaction fun! There are all kinds of games that provide much needed physical touch without requiring too much of an emotional investment from your child.
• Sing songs with interactive hand motions or dance. It may sound strange, but you don’t always have to actually be touching for an activity to count as physical touch. Moving in unison, such as doing silly dances or walks together or singing songs with group hand motions, stimulates the same feel-good endorphins as physical touch. • Help the child with hand over hand assistance. Does your child need help buttoning a coat, putting on shoes, or buckling up in the car? These are wonderful, practical ways to include physical touch in your day. • Side hugs. These are great for kids who need physical touch but don’t like eye contact or other face-to-face interactions. • High-fives. Sometimes a simple high-five, fist-bump, or secret handshake is enough to let children know they are loved. Plus, these actions are fun, inclusive, and low stakes. I also recommend “air high-fives” or “air clapping” for children who are particularly sensitive to touch. • Apply lotion. Any kind of grooming can be an ideal opportunity for physical touch. Lotion or sunscreen is especially good for children who react negatively to rough textures or skin-on-skin contact. The 5 Love Languages: The Secret to Love That Lasts by Gary Chapman is an internationally best-selling book that topped the New York Times list for 10 years running and is now celebrating nearly 30 years in print. Many of the ideas in this article are not original, rather, they are summarized, adding a unique take based on professional experiences, and explaining ways parents can adapt Chapman’s ideas to better suit special needs children. 1
Springbrook Autism Behavioral Health is a state-of-the-art campus and nationally renowned program for the treatment of autism in children and adolescents ages 5-21. Springbrook works with the entire spectrum of children, adolescents, teens, and adults with autism, including patients at all developmental levels. The experts at Springbrook begin work with children at younger ages, using advanced, evidence-based autism therapy programs. Their dedicated staff is committed to autism programs and therapies that address the needs of the whole child beyond the diagnosis. Springbrook has been serving children with autism and their families at their campus in Traveler’s Rest, SC, for over 30 years. Website: https://springbrookautismbehavioral.com/
Exceptional Needs Today | Issue 2 | 11
SKILLS FOR LIFE
Finding What Works and How to Stick to a Schedule with Special Needs
By Jake Edgar, Director of Special Education, and Jordynn Frollo, BCBA SUDDEN CHANGES IN ROUTINE AND UNSTRUCTURED ACTIVITIES CAN BE STRESSFUL FOR ANYONE, BUT FOR CHILDREN WITH SPECIAL NEEDS, THESE STRESSORS ARE ESPECIALLY CHALLENGING AND CAN CAUSE THEM TO FEEL CONFUSED AND OUT OF CONTROL, WHICH CAN TRIGGER BEHAVIOR PROBLEMS. CHILDREN WITH SPECIAL NEEDS SUCH AS AUTISM SPECTRUM DISORDER (ASD), ATTENTION-DEFICIT/ HYPERACTIVITY DISORDER (ADHD), AND ANXIETY NEED ROUTINE AND STRUCTURE AT HOME AND IN THE CLASSROOM TO BE THEIR MOST SUCCESSFUL.
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SKILLS FOR LIFE
W
ith advanced planning and consistency, parents and teachers can help reduce stress in children with autism and have better success accomplishing daily tasks. Below are some tips for establishing and sticking to a schedule at home or school.
CREATE VISUAL SCHEDULES Visual schedules use a series of pictures or graphic representations of scheduled activities to help a child understand their daily routines. Visual schedules help break down a task with multiple steps to make it easier for children to understand and learn what is expected of them. Visual schedules also decrease stress about the tasks and transitions from one task to another by establishing an order and routine. The first step in creating a visual schedule is to identify the task or tasks that need to be completed. Break each task into steps, using a picture or graphic to represent each step. Then, place the schedule where your child can easily see it throughout the day. The more specific the schedule is, the more success your child will have in following it. For example, rather than scheduling a large block of time for “schoolwork,” break it down into sections or units, such as “Math lesson,” “Science lesson,” “Study time,” etc., with rewards built into the schedule where possible. Take time one-on-one to review the schedule with your child before starting it. Doing a walk-through of the daily activities can also be helpful, particularly if a child is transitioning to a new classroom or school. Introduce students to each person involved in the schedule in the order of the schedule to eliminate any surprises. Practice will help students understand where to go, who they will be seeing, and what they will be doing. The same can be done in the home by introducing children to caregivers or tutors they will regularly see in the space they will be together to ensure they are comfortable and not overwhelmed when it comes time to implement the new activity. Visual schedules give children with special needs comfort and a sense of security, especially high functioning children. Having their own schedule gives them a sense of independence. Let high functioning children set their own schedule or at least follow the plan on their own. Another option for high functioning individuals is to create a schedule for more challenging areas. For example, if your child can handle random changes or additions to plans, you may want to create a daily schedule for hygiene, homework, or to limit technology use.
UTILIZE A FIRST-THEN SCHEDULE Implement a “First-Then” schedule based on the Premack Principle that a less desired behavior can be reinforced by the opportunity to engage in a more desired behavior. For ex-
ample, “First eat your dinner, then you may have dessert,” or “First brush your teeth, then you may read a book before bed.” Use what is known as a low probability request, or the activity that is less appealing—eat your dinner, brush your teeth—followed by a high probability request that is more appealing, such as having dessert or reading a book. This strategy works well for children with a lower level of cognition who are best at understanding and complying with one demand at a time. For higher functioning individuals, the rhythm of tasks and reinforcers, or the high probability requests, can be adjusted. Try two or three full tasks before introducing a reinforcer—i.e., Brush Teeth, First Class, Second Class, Break Time/Reinforcer, Lunch, Homework, Reinforcer, Dinner, Screen Time. End the day with a reinforcer. Build the schedule systematically; a break can include preferred time away from a class/activity or something the child wants to earn. Choice-making opportunities within a schedule will motivate the child. If there are two tasks needed, give your child the choice of which one to do first. The sense of choice will make them feel more independent. Reward is key to keeping children motivated and on track. If changes to the routine occur, give your child advance notice and a choice to redirect that time when possible. For example, “Soccer practice is canceled today, but we could go to the mall or to the park to play soccer because I know you were really looking forward to it.” This will teach children how to make good choices when one is denied.
MOTIVATE YOUR CHILD Children with autism are naturally motivated by different incentives than other children. In particular, children with autism are often less likely to experience social interactions, such as praise, friendship, or touch, as intrinsically rewarding.
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SKILLS FOR LIFE
The key to success in making a plan and sticking to it is to start with small, simple, measurable steps and consistency. By doing so, your child will see success quickly, leading to greater success with more complicated tasks. Studies have shown using positive reinforcement or a reward system, known as operant conditioning, is successful in teaching individuals with autism a number of different skills. The process involves establishing motivation or observing what the child wants to do and using it to reward the child for completing the task. A good example is asking a child to take a bath, particularly if this is a trigger word for a child who has a negative response to bathing. If the child has no motivation to take a bath, an argument about taking a bath will only result in continued negative behavior. Conversely, assigning a motivation to the bath by first asking which toy the child wants to play with in the bath from a choice of two desired items establishes motivation through the reward of playing with the toy and gives the child power in the situation (toy choice) while the question about the toy choice automatically assumes the bath is going to happen. Choosing a toy allows the child to focus on the motivation for positive behavior—playing with a desired toy—which could reduce stress for both the child and the caregiver.
MANAGE TRANSITIONS Regardless of the type of schedule that works best for your child, managing transitions from one activity to the next are important. Be intentional about building transitions into your schedule. Leaving a task unfinished can be frustrating for children with special needs, particularly when co-morbidities such as ob-
sessive-compulsive disorder (OCD) exist. One strategy that works well is to allow the last five minutes of every activity to get ready for the next activity. Perhaps even more effective for smooth transitions is a countdown strategy, which provides timed warnings prior to the transition. Giving verbal or visual warnings at 10 minutes, five minutes, three minutes, two minutes, and one minute, for example, helps children finish the current activity and prepare for the next, so they know when to anticipate the change. Provide structure for the transition, as well, offering queues for each step of the transition, i.e., closing books, putting away materials, lining up to go to another room, etc.
BE CONSISTENT The key for any type of schedule is consistency. If parents give in to requests for “five more minutes” of technology time one day but not the next day, the inconsistency may cause the child to have a meltdown. Stick to the schedule, even if they are begging or behavior has been great. Setting a reward system to give your child more electronics time can work if expectations are set ahead of time. Don’t be wishy-washy with schedules! The key to success in making a plan and sticking to it is to start with small, simple, measurable steps and consistency. By doing so, your child will see success quickly, leading to greater success with more complicated tasks.
Jake Edgar is the Director of Special Education at Springbrook Autism Behavioral Health located in Traveler’s Rest, SC. A resident of Seneca, SC, Jake first discovered his passion for working with children with special needs while in high school. He pursued his passion through working with Special Olympics throughout South Carolina. A graduate of Clemson University, Jake majored in Special Education and ran the Council for Exceptional Children. He began his teaching career at Seneca High School, leading the “Transition to Independence” program that worked to help children of all ability levels develop life skills. At Springbrook Autism Behavioral Health, Jake leads a talented group of educators in identifying the best ways to help students on the autism spectrum and those with behavioral disorders succeed in the classroom. Jordynn Frollo, BCBA, began her career in the field of Applied Behavior Analysis in 2010. She received her Master of Science in Behavior Analysis from Simmons College in Boston, Massachusetts. Jordynn is currently a BCBA at Springbrook Autism Behavioral Health located in Traveler’s Rest, SC. Jordynn previously worked as the Coordinator of Registered Behavior Technicians (RBTs) and Senior BCBA in Huntington Beach, California. Throughout her years in the field, she has worked with a range of individuals from infancy to adulthood. Jordynn has worked in early intervention centers, residential facilities, family and group homes, job training programs, day programs, clinics, and school settings. Springbrook Autism Behavioral Health uses a number of proven, evidence-based autism therapies to address problem behaviors and build life skills. Contact the ABA Program at Springbrook to learn more. Website: https://springbrookautismbehavioral.com/
14 | Exceptional Needs Today | Issue 2
EXCEPTIONAL EDUCATION
IEP Season: Five Things to Feel Comfortable About When Heading into That Meeting
By Chris Abildgaard, LPC, NCC, NCSP SINCE MARCH 2020, WE HAVE BEEN CHALLENGED IN A VARIETY OF WAYS. WE HAVE HAD TO ADAPT TO WEARING MASKS, BEING SEPARATED FROM FAMILY AND FRIENDS, WORKING FROM HOME, AND FOR MANY STUDENTS, BEING EDUCATED THROUGH A COMPUTER. WE ARE NOW ENTERING THE TIME OF YEAR WHEN ONE’S INDIVIDUAL EDUCATIONAL PROGRAM (IEP) WILL BE EXAMINED AND REVIEWED WITH THEIR SCHOOL-BASED TEAMS TO DETERMINE HOW THE STUDENT HAS DONE OVER THE COURSE OF THE SCHOOL YEAR. THESE MEETINGS CAN BE EXTREMELY DAUNTING; IT IS IMPORTANT TO REMEMBER BOTH FAMILIES AND EDUCATORS BECOME ANXIOUS BEFORE THESE LARGER MEETINGS WHERE DECISIONS ABOUT A PERSON’S EDUCATIONAL FUTURE ARE MADE. AFTER SITTING THROUGH THOUSANDS OF IEP MEETINGS IN MY CAREER AND AFTER SPENDING THE PAST FOUR MONTHS ATTENDING IEP MEETINGS REMOTELY, HERE ARE A FEW TIPS TO REMEMBER, THINK ABOUT, AND PROCESS BEFORE HEADING INTO YOUR SON/DAUGHTER’S ANNUAL REVIEW.
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EXCEPTIONAL EDUCATION
communicate with the family about possible ideas for new goals and objectives, recent observations, and any feedback they may have to help the family be more active during the meeting. If there is a sense of concern or questions around one’s educational program, I often will have the parents reach out to the administrator so their concerns are heard ahead of time. This allows the administrator to craft some options for programmatic changes that can better meet the needs of the student and their family. While there are times the schoolbased team and the parents disagree, if both sides effectively communicate with each other and approach the IEP process as collaborative partners, agreements can be reached as the focus always needs to remain on doing what is in the best interest of the student.
3. 1 IEP, 2 IEP, 3 IEP meetings, oh my! 1. Review last year’s IEP and progress reports As a consultant and someone who attends many IEP meetings with clients, I always remind my clients to reread last year’s IEP. You, as a parent, want to make sure you review those notes from the previous meeting, reflect on any progress you have seen over the year, and begin to think about some objectives you may like to see your child work on so they can continue to make success within the school setting. Look at the focus of the last year’s IEP. Was the focus on academic progress or social/emotional growth? This has been an interesting year, and many of us have witnessed our children learning from home. Although it is a different environment for sure, we can still use some of our observations as a conversation point for new goals and objectives. Think about how you saw your child attend class lessons, stay on task, manage materials, participate in Google Meets, etc. Your observations and feedback on your child’s learning behaviors should be heard by the team and integrated in some fashion. Certainly, the IEP should be a document that helps bring a student’s academic skill set to the next level; however, over the course of the next few years for sure, I am strongly advocating for just as much emphasis on the social/emotional wellbeing and growth of all students. We are in the middle of a pandemic, and how we regulate our emotions, communicate our needs, and find some semblance of social connection does impact a student’s academic progress. By reviewing last year’s IEP and thinking in a framework of building off of that last document, you will be helping the team (and your child) scaffold and continue a path of positive academic and social/emotional growth.
2. Open and reciprocal communication is key It’s good to have questions. It is okay to ask for data. It’s important you ask for feedback and impressions before your IEP meeting. I tend not to like surprises at these meetings. I encourage my clients to send their questions to the team three to five school days ahead of time so the team knows how the family is feeling. Likewise, I ask the school-based team to
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Here is the good news and something I tell my clients all the time: if you don’t get everything accomplished at this IEP meeting, you can always call another meeting to finish. I completely understand wanting to get through everything in one meeting—that is ideal. Sometimes, though, sitting around a table for three-plus hours doesn’t do a world of good. If you feel like there is just too much to discuss, write to the team asking for two separate meetings ahead of time. This way, you can focus on the goals for the first meeting and then prepare for the second. Most cases will not need to have two separate meetings. However, for those cases that are more complex and/or involve multiple people, agencies, consultants, etc., asking for that second meeting may make the most sense. Coming to the table multiple times does take time out of the parent’s schedule and the schedule of the school staff. However, I have seen this approach to be more collaborative and unifying rather than trying to squeeze in one hundred things in a two-hour time block (if that) when people’s emotions are already on edge and on high alert. These more extended, more stressful types of meetings can often be more dividing and adversarial, which tends to harm relationships, trust, and overall cohesion.
4. For older students (7th grade and up), ask for input As we prepare and review the IEP from previous years, we also don’t want to forget about student input. As students get older, it is so important for them to have input on their academic plan. Now, not all students will be ready to give this input when they are in middle school, but checking in with your child about how they like school, if there is something more they think they need, or if there is anything they think can change about their day or academic program can be beneficial. As students enter high school, it becomes even more important to make sure they are part of the process and develop an understanding of their own strengths and areas of need. As the adults and professionals in our students’ lives, we certainly bring an important perspective and knowledge base to their educational program. However, we cannot un-
EXCEPTIONAL EDUCATION
As we prepare and review the IEP from previous years, we also don’t want to forget about student input. As students get older, it is so important for them to have input on their academic plan. derestimate the students’ input and their perspective on what is actually working for them!
5. Do something for yourself the night before the meeting It’s the night before the IEP meeting, and you are…stressing! Believe me, being the father of two children with IEPs, I know the feeling. Hopefully, by this point, you have completed tips one to three and are now ready to do something for yourself.
Heading into the IEP meeting with a little stress and anxiety is not a bad thing. It keeps us on our toes, ready to listen and attend to what others may be reporting on. However, in order for us to be the best possible advocates for our children, we have to be in the right frame of mind. There is a time to put away the big IEP binder and relax to the best of our ability. Spend it with your family, cook a nice dinner, play a board game, go for a walk, or enjoy a glass of wine. It is okay to take care of yourself before these larger meetings, and in the end, it will prove to be more beneficial for you and your child.
Chris Abildgaard, LPC, NCC, NCSP, is the owner and director of the Social Learning Center, LLC, located in Cheshire, CT. Chris has been in private practice for over 13 years. Along with his private practice, Chris is an Adjunct Professor in the Special Education department for St. Joseph’s University located in West Hartford, CT. Chris is a Nationally Certified school psychologist, a Board Certified national counselor, and a licensed professional counselor with a specialization in autism spectrum disorders. Chris is currently pursuing his doctorate of education (EdD) in School Psychology from Loyola University Chicago. In his free time, Chris loves hanging out with his three children, playing tennis, and grilling! Website: https://www.sociallearningcenter.org/ Facebook: https://www.facebook.com/SocialLearningCenter Twitter: https://twitter.com/SLC545 LinkedIn: https://www.linkedin.com/in/chrisabildgaardslc/
Exceptional Needs Today | Issue 2 | 17
PARENTAL SUPPORT
How to Advocate for Your Autistic Child Beyond the ASD Community
By Rebecca Lake AS A PARENT CARING FOR YOUR CHILD LIVING WITH AUTISM, YOU MAY BE FACED WITH DIFFICULT AND UNCOMFORTABLE DIALOGUE WITH OTHER PARENTS IN YOUR COMMUNITY. HOW YOU CHOOSE TO RESPOND WILL GREATLY IMPACT THE RELATIONSHIPS YOU FORM IN YOUR COMMUNITY AS WELL AS YOUR CHILD’S.
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orming meaningful relationships within the autism community allows families to access more resources, seek support, and feel accepted and understood. When joining a social network that consists of people who can relate to your experience, instant connections are made, and we become more comfortable reaching out for support or simply sharing stories along the way.
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Now—let’s look outside of the autism world and consider the interactions you’ll have with other parents who are raising neurotypical children. Chances are, you’ll interact with these individuals more than you do the autism community. This may consist of your family members, close friends, or parents you meet at your child’s school or extracurricular activities.
PARENTAL SUPPORT
Someone who doesn’t lead the life you do living with a child on the spectrum may not know how to relate or what questions to ask. As your child’s advocate, you have been given the opportunity to educate other parents while raising awareness around neurodiversity. This, in itself, is an incredible opportunity and can ultimately create a shift in the way our society perceives autism. At the end of the day, it’s important to remember a parent’s number one priority is to ensure their child is safe, healthy, and given an equal opportunity to reach their full potential. Every parent will advocate for their children in different ways. You may not always see it from their perspective, which primarily is a perspective that only puts their child’s best interest at heart. A common conflict in the school system pertaining to supporting students on the spectrum is that additional support is required to integrate the child into a generalized classroom. This often requires extra time and resources, which can be perceived by other parents as taking away equal learning opportunities from the other students. When another parent comes forward to advocate for their child’s learning experience, they may not know how to approach the conversation without offending the child on the spectrum. Although the media is starting to portray autism in a more realistic light, some people just simply do not have experience or knowledge on the subject matter. This is a great opportunity to initiate dialogue with the other parent to collaborate and brainstorm solutions. Although it can be a difficult conversation to initiate, the following questions can best guide you through this process:
When educating others about autism, be sure to explain why your child behaves the way they do, why they may have trouble in social situations, or what stimming is and why they engage in it! If you’re a parent who doesn’t have these answers, seek them. The more you know about your child and autism, the better you will be able to confidently advocate for them. Another great way to promote inclusion and create awareness around your child’s unique abilities is to initiate play dates and social interaction with other families. If you have the opportunity to meet your child’s classmates and parents, suggest a playdate where your kids can have the opportunity to interact with one another. Improv is also a great social activity to encourage during play because it is interactive, inclusive, and inherently flexible. Every chance you are given, interact with people outside of your autism community—prompt their curiosity! Just as autism parents teach their children to ask for something they want access to but don’t know how to express it, encourage others to ask questions! If your child exhibits a behavior in public or engages in stimming in public, initiate a conversation with those that are clearly observing their “abnormal” behavior. Let them know you understand it may not seem normal to them, and explain why your child engages in stimming. Initiating or engaging in uncomfortable conversations with people who may not understand the world of autism because they have never been exposed to it is going to pave the way for your child. The more conversations we have and the more society is willing to spread awareness about autism, the more we promote inclusion! With inclusion comes equal opportunity for all—that means equal opportunity for your child. As an advocate for your child, you are their voice. Be mindful not to shut out the people who may not have experience or knowledge around autism, and in turn, make it your mission to enlighten others instead. Rebecca Lake is a heart-centered entrepreneur and a dedicated advocate for the neurodiverse community. She believes in equal opportunity for all and has made it her life’s goal to create a more inclusive world. With determination and dedication, Rebecca co-founded Endless Abilities Inc., a Behavioral Health Clinic in Ontario, Canada. She leads a team of driven professionals who share the same passion and provide quality care to all families. Rebecca also co-founded Sensa, a subscription box company that provides sensory and educational toys for children with autism and other disabilities. Rebecca’s involvement in the field and everyday collaboration with families and professionals has given her insight on quality sensory toys that aid in children’s learning. Sensa subscription boxes are available in Canada and the United States. Website: https://shopsensa.com/
Exceptional Needs Today | Issue 2 | 19
SENSORY STRATEGIES
Sensory-Smarts to Aid Long-Term Mental and Emotional Health
By Rebecca Duvall Scott
From My Sensational Family to Yours
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hen my son was diagnosed with sensory processing disorder (SPD) at age three, my world crashed in. Hopes and dreams plummeted, fears and worries surfaced, and anxiety was at an all-time high. Thankfully, I sought out a support team of occupational therapists and doctors who knew how to right the wheel before my family careened completely out of control, and after much prayer and hard work, here we are seven years later with an amazing story to tell. It boils down to this: we all have sensory systems (an integral part of our nervous system), and building a sensory-smart toolbox of interventions and accommodations can change your whole life! Believe it or not, I am grateful SPD stormed into our family and made us more self-aware, thus increasing our care of self and others, and because of what we’ve learned, the longevity of mental and emotional health benefits are bottomless.
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So, what are my top sensory-smart tips for maintaining longterm mental and emotional health benefits through sensory intervention and accommodation? Check them out—it’s as easy as one-two-three.
1. Support the nervous system through biomedical intervention and set the body up for greater success During our research, we discovered my son was deficient in 14 out of 16 major vitamins, minerals, and antioxidants. He also has a sluggish detox system, which means allergens and pollutants stay in his body and wreak more havoc than normal. After working with an integrationist who specializes in such detailed, preventative medical care, we got him on an allergen-free diet and supplemented the rest of the vitamins, minerals, and antioxidants needed to strengthen his nervous system function. The benefits were amazing; he started making eye contact, talking in
SENSORY STRATEGIES
sentences, and his hyper state of arousal steadily decreased to manageable levels. We also saw improvements in his moods and coping skills because when we function better, we feel our best!
hot bath, or whatever else feels good at the time that will help me re-center. When we are that well in-tune with our body and willing to take care of ourselves, the mental and emotional health will also be improved and maintained.
The nervous-, immune-, and gastrointestinal systems are interdependent. A lot of people do not realize that nervous system disorders like SPD and autism are just the tip of the iceberg. Once you know to look under the surface at the immune and gastrointestinal systems (targeted through diet and supplementation), so many things can shift for the better. Laying the foundation to a healthy, functioning nervous system is the base of long-term mental and emotional health.
3. Shift the mindset and build a support network so they can bring you back to center on the worst days Let’s say you become pros at biomedical and occupational therapy interventions and accommodations and have had months of clear sailing, then suddenly something terrible happens to derail the effort. There are a couple of mindset shifts that have worked well for our family, acceptance of the emotions involved being paramount. When the child feels accepted (or you give yourself some grace and achieve the same feeling of safety), working through the various emotions of life becomes possible. It goes back to being in-tune with your body, taking care of yourself (and teaching your children to do the same) so positive mental and emotional health can rebound. Likewise, working diligently to maximize strengths and minimize weaknesses goes a long way. My son knows his brain is wonderfully different, and he values that in himself. Not that SPD is without its challenges, but we accept the difficult days for what they are, refocus on the above strategies, patch our sail, and keep on sailing toward the goals we set for ourselves!
2. Incorporate occupational therapy interventions and accommodations when you start to feel out-of-sync You can have the cleanest diet and best personally tailored supplement regimen ever, and you will still have out-ofsync, rotten days. We all do! That is where having a large toolbox of sensory-smart interventions and accommodations come in handy. When your family is well-versed in occupational therapy ideas like sensory diets, alternative seating, exercises, and more, you can quickly adjust and salvage just about any situation. My son positively responded most to proprioceptive and vestibular activities when he was young (deep pressure and movement, like rolling up in a blanket like a burrito, wheelbarrow walking, jumping on a trampoline, and swinging), and even though he is nearing middle school age, we still pull out the same type of tools when he is struggling. Today it looks more like walking on a treadmill, timing him as he runs around the house, and lifting weights! He might grow up to operate heavy machinery or be an ER doctor…who knows? Jobs like those would definitely keep his sensory bucket filled to an appropriate, healthy level. The important thing is he has learned when his body feels out-of-sync, there are easy things to do to re-channel his focus and energy. Adults can take a page out of the same book! When I feel stressed and overwhelmed (which are adult terms for outof-sync), I am sensory-smart enough to know I need a break in the form of taking a walk, reading a book, indulging in a
Building a support network of people who understand your family’s challenges also increases and maintains positive mental and emotional health. There are days we all need family and friends! Sometimes they offer understanding, and sometimes they offer advice. It is as simple as one not being able to see the forest for the trees, and a good friend offers clarity that suddenly uprights the world again and helps you press on. When our bodies, minds, and hearts align, that is when we can weather any storm.
Do you want to know more? If you would like to learn more sensory-smart strategies to maintaining mental and emotional health for yourself and your child, check out my memoir, complete with professional commentary by an occupational therapist, Sensational Kids, Sensational Families: Hope for Sensory Processing Differences.
Rebecca Duvall Scott is the author of bestseller and three-time Amazon Top 10 Hot New Release, Sensational Kids, Sensational Families: Hope for Sensory Processing Differences. This self-help memoir chronicles the research, interventions, and mindset shifts that helped her family through her son’s sensory processing disorder diagnosis and contains professional commentary by an occupational therapist. Website: www.SensationalKidsSensationalFamilies.com Book: https://www.amazon.com/dp/1948238276/
Exceptional Needs Today | Issue 12 | 21
PARENTAL SUPPORT
Nature Notes Keeping the
Children’s Outdoor Bill of Rights Inclusive
By Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA IN THIS EDITION OF NATURE NOTES, I AM EXCITED TO TALK ABOUT A CONCEPT I ONLY RECENTLY LEARNED ABOUT: THE CHILDREN’S OUTDOOR BILL OF RIGHTS (COBOR). YOU MIGHT BE ASKING YOURSELF, WHAT IS THIS ALL ABOUT? IS IT REAL? I ASSURE YOU IT IS. COBOR HAS BEEN AROUND SINCE EARLY 2010 BUT IS RECEIVING RENEWED ATTENTION AS A RESULT OF INCREASING INTEREST IN BEING AND LEARNING OUTDOORS.
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OBORs acknowledge being outside is a healthy part of development for children and their families. As you will read in future columns, nature matters and needs to be a part of daily life. Typically, this bill of rights contains a list of easily
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understood and impactful outdoor activities children deserve to experience. COBORs are not laws that must be followed by citizens. Instead, these bills are passed by state or local municipalities in the form of programs, proclamations, or resolutions. They are aspirational. While you are likely to see
PARENTAL SUPPORT
overlap in the activities included in a COBOR, such as to explore nature, they are tailored to each state or city. For example, one of the bill’s activities in Florida does not include the right for every child to have the chance to make snow angels, but building a sandcastle is listed! Imagine that. Most COBORs are written to suggest all included activities be experienced by the time a child is 14 or starting high school. This makes sense because experiencing nature early in life tends to lay the foundation for an ongoing love of it as one grows older. Does this hold true for you? It certainly does for me. I am going to be bold and suggest COBORs have their roots in an important document called the Convention on the Rights of the Child, written by the United Nations Office of the High Commissioner in 1990. Although not specifically aimed at being outdoors, this document states unequivocally that play is the right of every child. I don’t think it is far-fetched to stretch this profound statement to include playing (and being) outside. A great deal of dedicated and focused community engagement must happen to create a children’s outdoor bill of rights. Advocacy, non- and for-profit agencies, educational, governmental, and/or grassroots organizations may come together to generate opportunities for citizens young and old to share ideas for what needs to be included in their area’s COBOR. Information about what is essential to incorporate might be generated through surveys, listening sessions, drawing, model making, and other creative activities. Once the information is gathered, the data is analyzed, after which
a preliminary bill is “drafted” and made available for further public commenting and review. Imagine what it might feel like to move the draft bill into the hands of state lawmakers, who push it to the next level of becoming a full-blown Children’s Outdoor Bill of Rights. According to both the Outdoor Alliance for Kids (OAK) and the Children & Nature Network, as of late 2020, 15 states have adopted a bill of rights: California, Colorado, Florida, Georgia, Illinois, Indiana, Kansas, Kentucky, Maryland, Michigan, New Jersey, New Mexico, Ohio, Oregon, and Tennessee. Six cities have either adopted or are developing their own children’s bill of rights to include San Francisco, CA, Seattle, WA, Austin, TX, Salt Lake City, UT, Baltimore, MD, and Lansing, MI. Likely, there are yet more in the works. I spent some time looking at the 15 states with a COBOR and compiled a list of their contents. All of the bills begin with a preamble statement essentially saying that “EACH, EVERY, (or) ALL children have the right to…” Most states include a statement that in some way indicates having the chance to explore nature is an important activity. It is! So too is camping under the stars, swimming or splashing in the water, experiencing nature through the five basic senses (smell, taste, audition, sight, and touch), playing, fishing, climbing trees, gardening, biking, walking along trails, volunteering to help wildlife, and exploring the unique outdoor features of each particular state. In Colorado, it is the opportunity to “experience the wonders of Colorado’s
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PARENTAL SUPPORT
four seasons: wildflowers, abundant sunshine, the changing aspen leaves, and fresh powder snow, identify [its] official state wildlife and plants in their natural habitat, and explore one of the dozens of local, state, and national parks in Colorado.” In Georgia and Kansas, their Children’s Outdoor Bill of Rights includes “discover Georgia’s/Kansas’ past” and to “celebrate their heritage.” I think the idea of COBOR is terrific because I believe being in nature nurtures the body, mind, and soul. Every child deserves access to being outdoors in a safe place. I believe so much in the power of nature. I research and write about it, develop inclusive nature programs, and design inclusive outdoor spaces to optimize health and wellbeing. But there’s a catch I cannot seem to move past. Perhaps you already picked up on it when
I used the word inclusive twice two sentences back. While the preambles of existing COBOR use words such as all, every, and each, is climbing a tree an activity every child can (or chooses to) do? Trail walking? Splash in a stream? Without modification or adaptation, these well-intentioned activities can be marginalizing for children with special needs. Exquisite care and due diligence need to be taken to ensure these bill of rights are written in ways that are inclusive for all children regardless of they or their families’ circumstances or situations. This due diligence could be rewording “trail walking” to more inclusive language such as “traverse an accessible trail,” which leaves the door open to experience this trail by rolling, using a walker, crawling, being carried, or independently walking. I am going to continue to think about this and would like to hear your thoughts, so please feel free to let me know.
Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA, is Principal of Amy Wagenfeld | Design and Lecturer in the Post-Professional Occupational Therapy Doctoral Program at Boston University. She is a Fellow of the American Occupational Therapy Association and the Center for Health Systems and Design at Texas A&M University and holds evidence-based design accreditation and certification (EDAC) through the Center for Health Design, specialty certification in environmental modifications (SCEM) through the American Occupational Therapy Association, and certification in Healthcare Garden Design through the Chicago Botanical Garden. Amy presents and publishes widely on topics relating 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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COMMUNICATION STRATEGIES
Developing Communication Skills…
Put a Speech Therapist on Your Team
By Karen Kaplan
SPEECH THERAPY IS THE ASSESSMENT AND TREATMENT OF COMMUNICATION PROBLEMS AND SPEECH DISORDERS. IT IS PERFORMED BY SPEECH-LANGUAGE PATHOLOGISTS (SLPS), WHO ARE OFTEN REFERRED TO AS SPEECH THERAPISTS.
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peech therapists address articulation disorders, fluency disorders, resonance disorders, receptive language and expressive language disorders, cognitive challenges (memory, problem-solving, speaking, and listening), aphasia, and dysarthria.
When a child, teen, or adult is unable to understand or express language, they become overwhelmed by frustration, confu-
sion, and anxiety. We see an increase in the physical ways of expressing their needs, wants, and don’t wants. Crying, elopement, tantrums, screaming, throwing objects, grabbing, pushing others, ripping up work, and refusal are demonstrated. When our children, teens, and adults with additional learning challenges can look at what they want, make a choice, point to what they need, give you what they do not want, show you a
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COMMUNICATION STRATEGIES
The sooner a child’s communication challenges can be identified, the sooner intervention can be started, so the child has an effective way to express themselves. picture, use a sign, or use their augmentative communication device or write, they are less frustrated and anxious, and there is more engagement, understanding, and connectedness.
So, what does the speech therapist do? • They assess, diagnose, screen, and prevent speech, language, and swallowing deficiencies
I believe they should have some of the following skills: • Be a problem solver • Be a team player • Be flexible
• They create treatment plans or write goals that address the specific needs of a child, teen, or adult
• Be committed to on-going learning in current techniques and strategies
• They monitor and evaluate the individual’s progress
• Be open-minded
• They offer counseling to families with tips for how to handle and cope with speech disorders
• Be organized
• They use tried and tested therapies in combination with new, innovative techniques • They may work one on one with someone, in a small group, or through a consultative model • They may work privately, be part of a school district, county office of education, clinic, or hospital team
• Be knowledgeable in the specific speech or language disorder they are supporting In the past 10 years, speech therapists have had to become more and more familiar with alternative communication systems and devices. They have had to understand how to match individuals to low tech, medium tech, or high tech supports for those who have challenges communicating verbally.
What are the qualifications of an effective speech therapist?
Therapists may need to create visual supports, such as schedules and choice boards to support communication. These are considered low tech. They may create a picture symbol system of communication—a more mid-tech system.
• Laws may vary from state to state, but nearly all states require that a speech therapist be licensed. They usually hold a master’s degree and have met required undergraduate and graduate course work plus clinical practice.
Some speech therapists become assistive technology specialists. Assistive technology specialists provide assistance with technology equipment for those with additional communication and learning needs. They help to understand, design, and
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COMMUNICATION STRATEGIES
engage in community events, work, and participate in leisure activities. Without some type of effective communication, their lives are limited. Their lives may be filled with frustration and anxieties. The speech therapist is a key partner with the family in designing effective communication systems so that the lives of your children, teens, and adults will be of the highest quality. RESOURCES
operate appropriate and effective devices. These are more high-tech devices.
So, why speech therapy? It is important for families to obtain a speech and language assessment as early as possible. The sooner a child’s communication challenges can be identified, the sooner intervention can be started, so the child has an effective way to express themselves. Families need to learn how to acknowledge all communication attempts and then how to expand on them. This is one of the roles of an effective speech therapist. Families need to know how to build language comprehension. The speech therapist can suggest a wide variety of activities to build receptive language skills in the home, at school, and in the community. Families with children with food sensitivities and swallowing challenges need the wisdom and specific strategies the speech therapist has been trained in delivering to address these types of disorders. The therapist can model strategies, and then these strategies can be carried over in the home and at school. It takes a village approach to help our children, teens, and adults learn effective communication skills, so they can access school learning, participate in social engagements,
The Autism Language Launcher: A Parent’s Guide to Helping Your Child Turn Sounds and Words into Simple Conversations The Autism Language Launcher: A Parent’s Guide to Helping Your Child Turn Sounds and Words into Simple Conversations: Kate Wilde: 9781785924828: Amazon.com: Books Promoting Speech, Language and Literacy in Children Who are Deaf or Hard of Hearing, Promoting Speech, Language, and Literacy in Children Who Are Deaf or Hard of Hearing (Volume 20) (CLI): Moeller Ph.D., Mary Pat, Ertmer Ph.D., David J., Stoel-Gammon Ph.D., Carol: 9781598577334: Amazon.com: Books Articulate Better with Speech Therapy, Articulate Better with Speech Therapy: 26 Effective Speech Therapy Strategies for Children and Adults to Articulate Better in 20 days (speech therapy, ... or stammer, treat lisp, treat Apraxia): Weston, Alexa: 9781696320788: Amazon.com: Books Six Minute Social Skills Workbook: Conversations Skills, Six Minute Social Skills Workbook 1: Conversation Skills for Kids with Autism & Asperger’s (Volume 1): Toole PhD, Janine: 9780995320826: Amazon. com: Books AAC Strategies for Individuals with Moderate to Severe Disabilities, AAC Strategies for Individuals with Moderate to Severe Disabilities: Johnston Ph.D., Susan, Reichle Ph.D., Dr. Joe, Feeley Ph.D., Prof. Kathleen, Jones Ph.D., Emily: 9781598572063: Amazon.com: Books Effective Augmentative Practices Effective Augmentative and Alternative Communication Practices: A Handbook for SchoolBased Practitioners: Da Fonte, M. Alexandra, Boesch, Miriam C.: 9781138710191: Amazon.com: Books Speech Therapy for Kids: A Parent’s Guide, Amazon.com: Speech Therapy for Kids: A Parent’s Practical Guide for Speech and Language Exercises for Children eBook: Richmor, Peyton: Books
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. You can connect to Karen at www.karenkaplanasd.com. She is always ready to listen and think of the possibilities.
Exceptional Needs Today | Issue 2 | 27
BEHAVIORAL HEALTH
WINNING THE
ANXIETY
BATTLE
By James L. West, MA, LMHC, NCC, and Christopher Williams, BS
AS HUMAN BEINGS THERE ARE A FEW THINGS WE ALL SHARE, THINGS WE CAN ALL RELATE TO, THINGS WE ALL HAVE IN COMMON. UNFORTUNATELY, NOT ALL THESE THINGS ARE GREAT. THERE ARE A FEW WE HAVE BEEN CURSED TO DEAL WITH, THINGS WE CANNOT HELP BUT FACE. ONE OF THE WORST OF THESE IS ANXIETY. ANXIETY IS THAT FEELING OF WORRY OR NERVOUSNESS. THAT UNEASINESS WE FEEL WHEN FACED WITH UNCERTAIN OUTCOMES.
A
nxiety can be experienced in many forms— maybe difficulty breathing or sweaty palms. A few may get a splitting headache or a feeling of a weight on their chest. Some of you may be feeling it just by reading this right now. Anxiety is a normal response to stressful and threatening situations; however, for some, it is a disabling response to everyday situations. For these, it becomes something diagnosable as an anxiety disorder.
Anxiety disorder vs. everyday anxiety Everyday anxiety is a manageable reflex to slight situations— something like feeling “butterflies” in your stomach before an interview. Anxiety disorder is a much more intense response that lasts long after the stimulus of the stress event concludes. Anxiety disorders are often followed by secondary issues such as depression, substance abuse, impaired relationships, and low self-esteem. There are several types of anxiety disorders, such as:
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n GENERALIZED ANXIETY DISORDER Involves persistent and excessive worry that interferes with daily activities. This ongoing worry and tension may be accompanied by physical symptoms, such as restlessness, feeling on edge or easily fatigued, difficulty concentrating, muscle tension, or problems sleeping. Often the worries focus on everyday things such as job responsibilities, family health, or minor matters such as chores, car repairs, or appointments.
n SOCIAL ANXIETY DISORDER Involves significant anxiety and discomfort about being embarrassed, humiliated, rejected, or looked down on in social interactions. People with this disorder will try to avoid the situation or endure it with great anxiety. Common examples are extreme fear of public speaking, meeting new people, or eating/drinking in public. The fear or anxiety causes problems with daily functioning and lasts at least six months.
BEHAVIORAL HEALTH
causes problems functioning. A person with separation anxiety disorder may be persistently worried about losing the person closest to them, may be reluctant or refuse to go out or sleep away from home or without that person, or may experience nightmares about separation. Physical symptoms of distress often develop in childhood, but symptoms can carry through adulthood.
Treatments
n SPECIFIED PHOBIA Involves an excessive and persistent fear of a specific object, situation, or activity that is generally not harmful. Patients know their fear is excessive, but they can’t overcome it. These fears cause such distress some people go to extreme lengths to avoid what they fear. Examples are fear of flying or fear of spiders.
n PANIC DISORDER Involves recurrent panic attacks and an overwhelming combination of physical and psychological distress. Symptoms are so severe, many people who experience a panic attack may believe they are having a heart attack or other life-threatening illnesses and may go to a hospital ER. Panic attacks may be expected, such as a response to a feared object, or unexpected, apparently occurring for no reason.
n SEPARATION ANXIETY DISORDER Involves being excessively fearful or anxious about separation from those with whom one is attached. The feeling is beyond what is appropriate for the person’s age, persists (at least four weeks in children and six months in adults), and
With all the trouble anxiety brings, there is still hope. There are several ways to battle anxiety; not all options work for everyone, so find the ones that work best for you. Effective treatments for anxiety disorders include cognitive behavioral therapy (CBT), eye movement desensitization reprocessing (EMDR), dialectical behavioral therapy (DBT), and exposure-based behavioral therapy. Both CBT and DBT incorporate relaxation and stress reduction techniques into their treatment of anxiety. Good nutrition is essential, and adding supplements such as B Vitamins, calcium, amino acids, and Vitamin C may be important. Caffeine, tobacco, and nicotine aggravate anxiety and should be eliminated or decreased. SOURCES https://www.psychiatry.org/patients-families/anxiety-disorders/ what-are-anxiety-disorders Alternatives to Medication for Mental Health - Supplements for ADHD, Autism, Anxiety and Depression https://www.totallifecounseling.com/vitamin-alternativestreatments-for-mental-health-instead-of-medication-orlando-floridadownload-program/
James L. West, MA, LMHC, NCC is a Licensed Mental Health Counselor, the author of StressLess Educational Series, president of Total Life Counseling, and his group has been interviewed by local and national media on issues facing adolescents and families. Christopher Williams, BS, is an intern for Total Life Counseling who has worked with children and families in foster care in the Orlando area for several years. He is dedicated to changing the stigma revolving around mental health issues and helping those in need. Website: www.totallifecounseling.com/addictions Video: https://totallifecounseling.com/electronic-addictions
Exceptional Needs Today | Issue 2 | 29
SKILLS FOR LIFE
A Firsthand Account to Using Your Gifts
to Find the Right Career
By Sydney Holmes
IT IS WELL KNOWN THAT PEOPLE ON THE AUTISM SPECTRUM CAN BE VERY PASSIONATE ABOUT THEIR INTERESTS. AS A CRITERIA FOR AUTISM, IT IS REFERRED TO AS RESTRICTIVE OR SPECIAL INTERESTS. WHAT IF THIS WAS NOT JUST A DIAGNOSTIC CRITERIA BUT A GUIDE TO HELPING NEURODIVERSE INDIVIDUALS FIND MEANINGFUL WORK WHERE THEY CAN BE FULFILLED AND SUCCESSFUL?
I
have always been aware of the negative stereotypes surrounding those on the autism spectrum. I have always been a very self-motivated person. I have also always been extremely stubborn. As you can imagine, this is a great combination to defy stereotypes. I have always refused to let others tell me what I can and cannot do, what I am and am not capable of; therefore, when people told my parents that I would never be successful, I was bent on proving them wrong. So, what does this mean for someone else on the spectrum or their parents? What is the secret to helping someone on the spectrum be successful? The answer is simple. A person on the spectrum needs to learn how to be self-sufficient and self-motivated but unpacking it can be a little complex. I have heard Dr. Temple Grandin speak at the Converge Autism Conference. She mentioned how people on the spectrum, regardless of support level, can learn ba-
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sic skills. She told all the parents to help their kids find a job. They can unpack groceries, shelve things, and other jobs that have little social interaction if that is a huge barrier. But she is adamant kids on the spectrum need to learn how to hold down a job. Dr. Grandin speaks of finding the space that is a gentle push for your autistic child without exacerbating problems and being careful not to enable them. As Temple was speaking, my mom leaned over to me and told me she heard Dr. Grandin speak years ago when I was a teen. Temple was also speaking on the same subject, and my mom took her advice to heart. That’s why I had chores, odd jobs, and she pushed for babysitting jobs when I got older. She wanted me to learn basic skills and work on social skills, as well as gently push me to stretch myself outside of my comfort zone. I may not have done all of these jobs willingly and took my dear sweet time on some of them, but I did them and learned a few skills.
SKILLS FOR LIFE
Now, what if it was a job, passion, or interest I wanted to pursue? What if I was doing a job that piqued my interest—what some clinicians call a special interest? Ever since I was little, I always found a way to turn my special interest into a job. When my special interest revolved around art, I wanted to be an art teacher. From fourth to eighth grade, I was really into cake decoration and told my mom I wanted to be a cake decorator at a local grocer. In high school, my special interest revolved around Latin and Roman culture and mythology, and I wanted to be a history teacher. In my undergrad, in addition to my history interests, I took up art again. I taught myself how to make jewelry and started a small business to sell what I had made. It did not last long, but it taught me marketing skills and gave me something to help my concentration and focus. Now in my graduate program, in addition to studying one special interest (history), I have taken up another art interest. I started to make soaps and sell them online, and it has been very successful. Autistic kids and young adults are not that different from neurotypical kids and young adults when it comes to choosing a career. We want to enjoy what we do. We also do not want our careers or expertise to merely be seen as diagnostic criteria diminished to special interest.
Exceptional Needs Today | Issue 2 | 31
SKILLS FOR LIFE
Autistic kids and young adults are not that different from neurotypical kids and young adults when it comes to choosing a career. We want to enjoy what we do. We also do not want our careers or expertise to merely be seen as diagnostic criteria diminished to special interest. My mom has always been supportive of my zipping from one interest to another, within reason. She has always encouraged me to use my interest as a way to develop a new skill. However, she never allowed me to overindulge in my special interest. Growing up, I had a specific time for whatever my special interest was at the time, usually in the form of lessons. When that time was over, it was over.
I encourage parents to help their kids find a way to turn their interests into a potential job. Now the thing with special interests is that they change every few years, so the special interest the child had at seven will not be the same as at 17. The dance lessons they have at six are not wasted if they become interested in robotics when they are 12. Every opportunity in a new environment or activity is important.
At first, I did not understand why I couldn’t decorate cakes all day, but as an adult, I now realize she was teaching me how to give myself a break so I don’t burn out and get frustrated, and I could learn moderation. She put limits, so I did not become obsessed and addicted to my special interest. She created a healthy education and exploratory environment.
According to Dr. Grandin, exposure to different things builds the autistic child’s development. But if you encourage your child and teach them how to think in ways that lead to a potential career, by the time they are older, they can do it on their own. They learn to be self-motivated because they are doing something they love. They will learn they can be self-sufficient because they are doing a job they love. Breaking the negative autistic stereotypes that those on the spectrum can’t do anything meaningful in their life starts at home. It starts with parents. It starts with a nurtured special interest. Interests serve several purposes—it is a way for the autistic person to decompress and sometimes cope with stress. The interest can be used to foster social skills and group involvement by finding a group around that interest, and who knows? It may end up being the very thing they find fulfillment in as a job or career one day.
As my mom, Dr. Stephanie C. Holmes, has said in many of her speaking engagements, “Too much of a good thing is bad for anyone. The same goes for a special interest. When someone on the spectrum makes up their mind they want to do something, there is not much a parent can do to change their minds. All we can do is show them how to achieve their goals.” She would suggest you find groups or activities where the child or teen could excel in their interest as well as grow in social skills with others around a passion or interest to help get the child/teen there.
Sydney Holmes is a 22-year-old graduate student studying Public History and Museum Studies. She runs a small successful soap business on the side. Sydney was diagnosed with Asperger’s syndrome, now known as Level 1 autism, when she was six years old. Sydney graduated with her bachelor’s degree in History and a minor in Education in the fall of 2019. Sydney has spoken with her mother, Dr. Stephanie C. Holmes, at numerous events such as the North Georgia Autism Conference. Sydney has also written many articles for magazines such as Autism Magazine as a teen and young adult. She is an autism advocate available for speaking and writing. Website: https://www.holmesasr.com/staff-and-board
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COMMUNICATION STRATEGIES
Ways You Can Use the
Sense of Smell to Improve Communication and Social Skills
By Ruth Sutcliffe
SMELL/DISCOVER/RECALL/CONNECT THIS PAST YEAR SHOULD BE CALLED THE YEAR OF RESILIENCE, AS VIRTUALLY EVERYONE HAS HAD TO LEARN HOW TO NAVIGATE THE THREAT OF CORONAVIRUS, THE NEW VIRUS THAT HAS TAKEN AND THREATENED THE LIVES OF SO MANY. SOME OF THE MOST VULNERABLE POPULATIONS INCLUDE SENIORS AND CHILDREN WITH DISABILITIES. MANY HAVE BEEN IN LOCKDOWN SINCE MARCH, SEVERELY AFFECTING THEM, FROM DIFFICULTY CONNECTING WITH LOVED ONES TO CONTINUING THEIR EDUCATION AND ACCESSING NEEDED THERAPIES. DURING THE PANDEMIC, RESEARCHERS HAVE LEARNED THE LOSS OF ONE OF OUR MOST UNDERRATED SENSES IS A COMMON COVID-19 SYMPTOM AND OFTEN LINGERING AFTER EFFECT: THE SENSE OF SMELL. THIS DISCOVERY WAS EVENTUALLY PLACED ON THE NATIONAL INSTITUTES OF HEALTH (NIH) AND THE CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC) LIST OF SYMPTOMS IN APRIL AND IMMEDIATELY DREW THE ATTENTION OF MEDICAL PROFESSIONALS AND MEDIA WORLDWIDE.
Exceptional Needs Today | Issue 2 | 33
COMMUNICATION STRATEGIES
The smell and memory connection—the science So how do smells trigger such strong emotions and memories? The answer is likely due to brain anatomy. According to neuroscientist and professor at Brown University, Dr. Rachel Herz, “Incoming smells are first processed by the olfactory bulb, which starts inside the nose and runs along the bottom of the brain. Interestingly, visual, auditory and tactile information do not pass through these brain areas. This may be why olfaction more than any other sense, is so successful in triggering emotions and memories” (Herz et. al. 2010). Further evidence shows the effect is found to occur gradually and largely outside the conscious mind (implicit activity in different parts of the brain): The sense of smell is housed in the Limbic system, the most ancient part of the brain that also houses emotion. Within this system are:
The sense of smell and The Proustian Effect A familiar term often used for the connection of the sense of smell to memory is “The Proust Effect,” which refers to the great classic novel by French author Marcel Proust in Remembrance of Things Past when the author recounts memories of teatime and a madeleine with his aunt. That time, that special moment with family, illustrates how quickly one can relive an event from the past through sensory stimuli. Many of us are familiar with those sudden moments when taken by surprise by sensory stimuli (for example, the scent of your mother’s soap) that evokes an intense and emotional memory of an episode from our childhood. After losing my mother to dementia-related causes in 2016, I wanted to merge my profession as a scent designer with a desire to support those who were suffering from dementia and Alzheimer’s by creating Essential Awakenings® Smell and Memory Activity Tool Kits. The 12 scents in the kits, such as the smell of grass to prompt memories of picnics and freshly mown grass in the summer, or cinnamon, which is likely associated with baking, are carefully-selected to resonate with the general population from various cultures. While giving smelling sessions to seniors in memory care communities, I realized I had also created an innovative communication tool that enabled seniors to engage in communication and storytelling through smell prompts. This encouraged me to extend the product to create MindScent®. This innovative kit would include visual clues, fact cards, and 20 distinguishable smell prompts that would resonate with children. Being a mother of a grown daughter born with a neurological anomaly but never diagnosed with autism spectrum disorder (ASD), I drew on my daughter’s love of The Almanac and hired her to research facts for that essential component of this new concept. In my mind, I wanted to help my daughter Claire be empowered and productive by participating in the development process of this patent-pending multi-sensory communication tool kit. In 2019, MindScent® went into production.
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1. the hippocampus that collects memory pathways from different sensory domains, 2. Amygdalae, which add emotion to experience, and 3. the Frontal Lobe, which oversees the coherence and consistency of memories. Stockholm University neuroscientist Dr. Artin Arshamian and his colleagues found evidence to suggest memories triggered by an odor (like the scent of a rose) were accompanied by greater activity in the limbic system (which includes the hippocampus and amygdala) than memories triggered by the verbal label of that odor (like the word “rose”). The scientists also found memories evoked by odors were linked to more brain activity in areas associated with visual vividness (Arshamian, 2013).
The process For MindScent® • After seeing increased engagement and communication among seniors and others, I wanted to see how the smell prompts might be able to elicit communication among other populations. • I piloted the use of smell for children and adults with communication challenges (i.e., mental disabilities, autism, speech, and language impairments). • I saw increased engagement and expressive language! • Speech-language pathologists (SLP) were given MindScent® prototypes to use in the summer of 2018. • Positive feedback was received by SLPs, prompting me to move forward and bring this innovative tool to SLPs, occupational therapists (OT), educators, and parents caring and servicing people with speech communication impairments. • Sourcing and manufacturing in the USA went into effect in February 2019.
COMMUNICATION STRATEGIES
What SLPs determined to be the best methods of use for MindScent® • Exposure to the included smells can stimulate thought that can emerge into full-blown conversations and entertaining activities. • Social skills games, memory activities, written or verbal language samples, and writing prompts can be enhanced using MindScent® smells. • The smells can be used in desensitization therapy or to alert and/or calm children who have sensory processing challenges. • The MindScent® Smell.Discover.Connect kit can be used by teachers from preschool to high school to teach about the sense of smell. • Vocabulary, grammar and syntax, critical thinking, articulation, and fluency activities can be built around MindScent®. • MindScent® activities can be used to improve memory, guessing or conjecture, comparisons, or social interaction. The smells and picture cards encourage discussion about interests and events.
Ruth Sutcliffe spent more than 30 years in the fragrance industry as a professional scent designer for end uses ranging from soaps and candles, to hair care, and celebrity perfumes. Her quest to use scent for therapeutic purposes began in 2016 after her mother died of dementia-related causes. She developed Essential Awakenings® Smell & Memory activities and kits for seniors living with the disease. During her activity sessions, she realized the distinctive scent prompts she used were unique tools that helped facilitate sociability and conversation among her audience. As a mother of a daughter with a neurological anomaly, she is familiar with the challenges parents and their children face with access to education, therapy, and support. In 2018, she began testing MindScent® methodologies for use with children at a New York City Autism Center, determined to develop a multi-sensory kit that could help educators and speech and occupational therapists who work with ASD children. Website: https://thescentgurugroup.com Email: thescentgurugroup@gmail.com LinkedIn: http://linkedin.com/in/ruthsutcliffe Twitter: https://Twitter.com/Scentguru Facebook: https://www.facebook.com/SpeechTherapyTool, https://www.facebook.com/thescentgurugroup Instagram: https://www.instagram.com/ScentGuruCulture/ YouTube: https://www.youtube.com/channel/ UC0215rl5znxWjYlYcMrG91g
• Increased utterance with written or verbal language samples can be enhanced using MindScent® smells as prompts. • MindScent® smells are distinctive. The smells of grass, apples, and watermelon, for example, can be used as reinforcers (rewards) to establish rapport. REFERENCES The Proust Effect: The Senses as Doorways to Lost Memories, Cretian van Campen, 2014 Herz RS, Eliassen J. Beland J, & Souza T. Neuroimaging evidence for the emotional potency of odor-evoked memory. Neuropsychologia 42 (2004,) 371-378 Arshamian A, Iannilli E, Gerber JC, Willander J, Persson J, Seo H-S, Hummel T, & Larsoon M. The functional neuroanatomy of odorevoked autobiographical memories cued by odors and words. Neuropsycholigia 51 (2013), 123-131
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FINANCIAL FOCUS
Life-Long Supports to Live Independently When There are Special Needs By Ryan F. Platt, MBA, ChFC, ChSNC, CFBS LONG-TERM SUPPORT IS AT THE HEART OF SPECIAL NEEDS PLANNING. IT IS ALL ABOUT ENSURING YOUR LOVED ONE HAS WHAT THEY NEED TO LIVE AS INDEPENDENT OF A LIFE AS POSSIBLE. IN ORDER TO DO THAT, WE MUST UNDERSTAND THE KEY ASPECTS OF LONG-TERM SUPPORTS: A PLACE TO LIVE, THE NEED FOR DAILY OR WEEKLY HELP, AND THE FUNDING RESOURCES NECESSARY TO PROVIDE FOR THOSE LONGTERM SUPPORTS.
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FINANCIAL FOCUS
community instead of a costly institution. Medicaid is the largest funder of these types of services, and it is the home and community based services (HCBS) that are essential to have in order to receive support in the community. Unfortunately, these HCBS are provided through each individual state, and the states are not required to fund them. This design has caused waitlists across the country to accumulate an approximate 500,000 individuals and can be eight to 10 years long as demand for these services continues to build. • Resources to help pay for a lifetime of support can certainly come from some government benefits, but as noted above, the amount can be lower than expected and the wait time long. To have enough resources, it is critical families start early in understanding the structure of Special Needs Planning and the system that will need to be navigated to provide the best life for their loved ones.
• For many individuals with a disability and their families, a place to live can be at the top of list of “things to figure out,” especially when Mom and Dad die or are no longer able to be the primary caregiver. It is common to find seven out of every 10 adults with a disability live with their aging parents, meaning at some point an alternative other than the family home must be discussed and decided. One of the issues that stands in the way is the affordability of housing for individuals with an intellectual/development disability (IDD). For many of these individuals, they live on a small monthly check called SSI, which annualized out does not even reach $10,000 of annual income. This level of income is small enough for these individuals to be priced out of every rental housing market in the United States. • Long-term support and services are also of the utmost importance in order to help an individual with IDD live in the
Planning for the future of an individual with an IDD can never start too early. A family must build a structure that will allow for qualification for necessary government benefits including the proper legal, financial, and tax positioning. A family must also have an understanding of the government benefit rules in order to apply at the right time with the correct information because not all benefits will be immediate. This means we must plan for them before they are needed, even before a family may truly know if their loved one will need benefits at all. Special Needs Planning is a life-long journey of setting a direction, making adjustments as your loved one matures, and being flexible due to changes in tax rules, the legal & economic landscape, and the ever-shifting sands of government benefits. https://thearc.org/policy-advocacy/community-based-longterm-supports-and-services/ https://thearc.org/policy-advocacy/housing/ 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 on-going, 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 28204
Exceptional Needs Today | Issue 2 | 37
MY WORD
Let Nonspeakers “Speak” into Their Own Lives
By Noah Seback
A
s humans, we all want to speak into our own lives, to make choices and plans, to influence the direction our lives take. How can a person speak into their own life if they are unable to speak? If you happen to be a nonspeaking autistic like me, that’s a great question. I “speak” by pointing to letters on a letterboard or keyboard with the support of a communication partner. In this way, I am able to spell out my thoughts and ideas. My voice can be heard, if not spoken.
emotional triggers. I am now able to explore my anxieties and emotional scars appropriately.
Nonspeaking autistics have a disconnect between what the brain tells the body to do and what the body actually does. When our brains tell us to speak, our mouths can’t execute the movement properly. We can’t output the inner knowledge we have. Unfortunately, this is often misinterpreted as an intellectual deficiency. Nonspeaking, however, does NOT mean non-thinking. Once my body was trained to effectively point to letters on a letterboard to spell, I was able to output what was trapped inside my brain and body.
So, what has all this meant to those closest to me? Try to imagine, as a parent, having your 16-year-old communicate to you for the first time: a game changer! No longer was I a mystery to my parents. Instead of consulting experts, they could consult the true expert on Noah Seback, autistic nonspeaker: me. Together we could combine forces to build a more fulfilling life for me. After all, this had been their goal all along. Now we could better target my specific profile and the support needed to achieve that goal. I could give input and feedback to eliminate their guessing and assumptions. I could help set priorities and participate in decision making regarding every facet of my life. I could express a lifetime of pent-up emotions, opinions, and ideas. My parents could now have meaningful interactions with me.
World: Meet Noah Seback, age 16. Since that time five years ago, my life has been transformed. Once perpetually taught on a kindergarten level, I am now embarking on a path of my own choosing: advocacy for other nonspeakers. Because of being misunderstood by the public school system, I was on track to a very different future. After gaining my voice, I considered earning a high school diploma. I explored getting my GED. I weighed attending college. I actually had options from which I could choose. ME, I could choose, not parents or educators or therapists or specialists. Once labeled a disruptive “behavior problem” because my body responds negatively to stress, I can now explain the fight or flight response that overrides my body’s ability to control its actions. I can partner with appropriate professionals to implement effective strategies when my body overreacts to
Though it was once impossible for anyone to know the real me, I now have deep and lasting friendships. People can look beyond what they see of me on the outside (often weird movements and sounds) to what I reveal of myself through my spelling. Sharing myself through communication allows me to connect on a rich personal level previously unavailable.
I want to appeal to anyone who knows an autistic individual who doesn’t speak or speaks minimally or unreliably. I urge you, believe that nonspeaker is in there. Presume competence despite their outward presentation. Don’t judge a book by its cover. Speak to and treat them respectfully and age-appropriately. If they don’t spell on a letterboard or keyboard, encourage and support them to explore doing so. Moms and Dads, isn’t it your dream to unleash their voice? Isn’t it your dream to unlock their potential? Chances are they share those same dreams. Don’t be deterred by naysayers or previous interventions that have dashed your hopes again and again. Nonspeakers long for and deserve their own voice. Freedom, agency, and autonomy await.
Noah Seback is a nonspeaking autistic who has gained the ability to communicate effectively through spelling on a letterboard or keyboard with the support of a communication regulation partner. He is a rising self-advocate who is passionate about promoting communication rights for fellow autistics who don’t speak or speak minimally or unreliably. His lived experience of 16 years as a nonspeaker without a voice has provided him with the ultimate training and expertise. Website: thisismenoah.com
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THERAPIES AND TREATMENTS
The Amazing Ways
Music Therapy Benefits Everyone
By JC Ellinger
IN MUSIC, THERE ARE NO COLOR LINES. THERE ARE NO JUDGMENTS. IT’S JUST YOU AND THE MUSIC.
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THERAPIES AND TREATMENTS
W
e entered a small room connected to a local resource center, Family Resource Network, which supports families with special needs children. Bonded to me (literally) were my then two and three-year-olds, who each had a dedicated sitting place on the grey-spotted carpet which was assigned matching instruments throughout the room. We were welcomed with frolicking, cheery music being plucked on the guitar strings by the music therapist sitting Indian-style in the front of the rectangular, four-walled meeting space. Immediately, there was a calm yet upbeat vibe my kiddos were magnetized to. Our first experience with music therapy was led by music therapist Karen Rae Sanchez, who is now President and Founder of The Pacific Resiliency Center for Psychology, Wellness, and the Arts serving the Central Valley and Bay Area region of California. “I love that I can take my passion for music and use it to help people in so many ways. It warms my heart to see them reach their goals and objectives,” shares Ms. Sanchez.
History of music therapy Music therapy has been used as far back as Ancient Greek times. Pythagoras, an ancient Greek philosopher (who also discovered the Pythagoras Theorem), connected the benefits of music therapy to soothe people and cure ailments of the body, mind, and soul. In more modern times, Francis Raucher, a psychologist, discovered the link between music and emotion being intuitively felt, such as when one hears music that sends “chills” or goosebumps. A study carried out by University of California PhD student Matthew Sachs found 90 percent of musicians report feeling chills. “The most powerful chills occur when expectations are being met, and the reward system in our brain becomes active.” My son was around five years of age when he declared, “Mommy, I want to play the piano.” I am not sure who or what prompted his curiosity, but I first chalked it up to a benign curiosity. However, for the next two weeks, multiple times a day, he would ask about when he would start piano lessons. As I am sure many of you can attest, when our children want something, they can truly be sufferingly relentless (this was one of many times). Along with his early love for an upbeat Bruno Mars tune or carelessly dancing to a live band with his grandfather on the sidewalks
of Downtown Disney, music has always been a reliable go-to that brought smiles to his face. I asked Ms. Sanchez about a time when she exhibited her profession as a music therapist that warmed her heart or ignited her decision to do what she does. She kindly shared this heartwarming story: “When I worked in the adult oncology unit, I had a patient who needed a bone marrow biopsy but couldn’t have any more pain medication. They called me in and he sang ‘Amazing Grace’ with me while I played the guitar over and over again until the procedure was over.” Additionally, Ms. Sanchez has combined her passion and background for music and psychology in another unconventional way. “I was on [working] in the pediatric burns intensive care unit with a young boy in a medically induced coma with burns over 95 percent of his body. His heart rate was the fastest I had ever seen. I used my knowledge of music and entrainment (referring to an individual’s chronological, physical, and behavioral relationship with their environment) to match the speed of the live music to his heart rate. Then gradually slowed down my music and watched as his heart rate decreased. We know that research has shown [a correlation between] a slower heart rate and a greater physiological relaxation response.”
How music affects our bodies The term “Mozart Effect” is the popular idea that listening to classical music can enhance the intelligence of people and babies in particular. What should be stressed is to turn on this so-called “Mozart Effect” does not mean one has to only listen to Mozart. On the contrary, one must only listen to music that triggers these responses, which may be any genre from Def Leopard to Billie Holiday to the country-stylings of Hank Williams or the soulful sounds of Aretha Franklin. What we experience, what we are exposed to, and what is familiar to us drive what we see and hear. The more we listen to music, the more fuel that fills our music memory. We, as humans, have expectations, and when those expectations are met or exceeded, our brain and bodies are rewarded. At this climactic point of listening to a song that hits our individual peak, there is a release of dopamine, a neurotransmitter by the brain, which sends pleasure signals to the rest of the body.
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THERAPIES AND TREATMENTS
Ms. Sanchez further elaborates, “Because of the increased utilization of Telehealth, the possibilities are endless as far as what we can offer and how accessible our services can be. I’ve expanded my practice to include mental health and wellness services, along with other creative arts therapies such as art therapy, to focus on emotionally supporting the whole person.” My bright, inquisitive 11-year-old young man has his defiant moments like stomping off in a tiff when I recommend he get some piano practice, then hearing about how that practice is taking up his precious iPad time. Yet, when he concludes a lesson on Thursday afternoons, his casual sway down the hallway always has a noticeable T-swag bounce. Once he shares a hug, details about his piano lesson pass through his voice with excitement and enthusiasm. “I love that I can take my passion for music and use it to help people in so many ways. I [Ms. Sanchez] use music to help engage a child with autism to help execute commands or questions such as ‘what’s your name?’” To say music is a drug is nothing short of the truth. A healthy one on that note!
Music and the pandemic We all are seeking channels to cope healthily in an age when we feel anything but safe. People are outside more than ever, and bicycle shops around the globe have lines going out the door every day of the week. Fender, one of the leaders in the guitar retail industry, is selling more guitars in 2020 than any other year in its history. Within the music stream, according to statistics by Data Driven Investor, “SiriusXM has signaled that it expects to add more subscribers than anticipated after tracking a 40 percent rise from earlier projections. Additionally, with an anticipated increased cash flow to $7.7 billion.” Yet, within music therapy, it is Telehealth (the use of digital technologies to access health care services) that drives much of the medical field to be able to support mental health while keeping our physical health distanced.
Music creates a language individualized for each person, each unique soul. As Ms. Sanchez illustrates, “music creates a space for each person.” Music interweaves a world that doesn’t always make sense when words are not enough. As for my son whose mind is never at rest, music gives him a sanctuary to be who he is—and that is always enough. REFERENCES “How the pandemic has increased online music streaming for only 1% of the music business.” Retrieved November 30, 2020. https://medium.com/datadriveninvestor/how-the-pandemichas-increased-online-music-streaming-for-only-1-of-the-musicbusiness-d6180d01ae5f Beetjnes, D. & Reumers, R. (2019). “Emotion in music, giving you the chills.” Retrieved November 28, 2020. https://abbeyroadinstitute.nl/ blog/emotion-in-music-giving-you-the-chills/ Pauwels, Ernest, K.J., Duccio Volterrani, D., Mariani, G., and Kostkiewicsc M. (2014). National Center for Biotechnical Information. “Mozart, music, and medicine.” https://www.ncbi.nlm.nih.gov/ McGilchrist, S. (2011) BBC News. “Music releases mood-enhancing chemical in the brain.” Retrieved November 28, 2020. https://www. bbc.com/news/health-12135590
JC Ellinger brings life stories and experiences as an autism mom to publications such as Autism Parenting Magazine and Exceptional Needs Today. She is currently working on her first children’s book geared at bringing relatability and support to other ASD children just like her amazing son. She carries an MBA from Regis University and a BA in Communications from CSU Long Beach. Now, she is returning to graduate school to add an MA in English to her resume and spread her love for writing to young minds. Facebook: https://www.facebook.com/jc.ellinger.writer Instagram: https://www.instagram.com/jc.ellinger Email: Juliet.ellinger01@gmail.com
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EXCEPTIONAL BOOKS
From an Autism Mom with Love By Diana Romeo From an Autism Mom with Love is a collection of personal letters that gives you a look into the life of one family’s experience living with someone on the autism spectrum. These letters are written from a mom to her son, to God, and to the community at large and will bring you through a range of emotions. They share experiences spanning from diagnosis, through school years, until today, when he is transitioning into adulthood. The letters are funny, sad, poignant, frustrated, informative, and hopeful. This is a real-life look at one family’s experience with autism in a world that is not always autism-friendly and how this mom continually learns to navigate the many challenges and joys. Life with autism is often a roller coaster, but this book shows it is a ride filled with love. “This little gem of a book packs quite a punch. The letters draw you quickly and deeply into the all-consuming world of autism…Unexpectedly powerful.” MsJoeyjay “I thoroughly enjoyed reading this beautifully composed book. Each entry delicately details the author’s experiences and unconditional love for her wonderful son.” Randy B.
TO PURCHASE: : https://www.amazon.com/Diana-Romeo/e/B08FCSMBWJ
Diana Romeo is a proud, full-time, stay-at-home mother of two children. For 19 years she has been on the front line of mothering a very sweet boy who falls on the moderate to severe side of the autism spectrum. She also is mother to a sweet and drama-filled 17-year-old daughter. She recently published her first book, From an Autism Mom with Love. She previously published articles describing her family’s adventures in autism in Autism Parenting Magazine and Exceptional Parent Magazine. She has a degree in business management and has worked in human resources. Facebook: https://www.facebook.com/dianalromeo/ To purchase: https://www.amazon.com/Diana-Romeo/e/B08FCSMBWJ
Exceptional Needs Today | Issue 2 | 43 ADVERTISEMENT
STAYING FIT AND HEALTHY
Fitness Anywhere:
Excellent Home-Based Programs for the Special Needs Community By Eric Chessen, MS YOU MAY BE, AS A RESULT OF COVID, TASKED WITH CREATING AN ADAPTED PHYSICAL EDUCATION PROGRAM IN THE HOME. OR IT MAY BE THAT SINCE THERE’S MORE HOME TIME, YOU’VE CONSIDERED INCREASING THE AMOUNT OF EXERCISE AND PHYSICAL ACTIVITY FOR YOUR CHILD OR TEEN WITH SPECIAL NEEDS. FITNESS AND EXERCISE ARE CLOUDY PHRASES. WHAT DO THESE WORDS MEAN? WHAT MAKES A “GOOD” FITNESS PROGRAM? WHAT PRACTICAL STRATEGIES CAN YOU USE TODAY TO START OR OPTIMIZE A HOME-BASED FITNESS PROGRAM?
T
here’s no such thing as special-needs-specific or autism-specific exercise. There are just, well, exercises, some with more applicable qualities than others. When we consider which exercises to use in any program (home, school, gym), we have a few questions to answer: 1. Which exercises are going to provide the most benefit? 2. What are the needs/goals of the individual? 3. How much space do we have for movement? 4. What support do we have for running the program?
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STAYING FIT AND HEALTHY
So, what constitutes a “good” fitness program? How individualized does it need to be? Well, here’s the thing; while everyone is different and needs vary, the reality is that fitness programming is remarkably similar with slight changes based on individual abilities. In our Autism Fitness programming, all of our athletes perform basic, fundamental movement patterns that include hurdle steps, crawling patterns, squats, presses, heavy carries, and a variety of upper-body pulling exercises. The exercises remain constant. What changes are two variables that are absolutely necessary for successful programming.
Avoiding mistake one: objects vs. objectives By the time many families contact me, there is some variation of “We tried a treadmill/elliptical/some machine, and it didn’t go really well.” I applaud you for embarking on the fitness journey. The issue here is one we refer to as “objects vs. objectives.” Rather than work around a given piece of equipment (the treadmill), it is essential to consider what the individual needs in terms of exercise programming.
What are the needs? Overwhelmingly, the most common movement issues among the special needs population, in addition to individuals with related developmental disabilities, include three categories: strength, stability, and motor planning.
Strength, stability, and motor planning The strength and stability deficits are often diagnosed as “low tone,” which can inhibit everything from gait to carrying laundry or a garbage bag. Strength and stability deficits left alone may eventually lead to movement dysfunction and patterns that increase the likelihood of lower back pain and other issues in adulthood—situations it would obviously be best to avoid. Motor planning is the transition from one movement pattern to another as efficiently as possible. Individuals on the autism spectrum and other special needs may have difficulty with tasks that require switching from one physical sequence to another, whether predominantly gross motor or fine motor.
Fitness is a life skill and should be considered and accounted for as such Without a proper fitness program being implemented, individuals with developmental abilities are at the same, if not higher, as some research indicates, risk for medical complications that result from inactivity. These have direct consequences on quality of life and independence. If we begin focusing on these deficits and building skills now, we can greatly reduce persistent and chronic issues in the future.
Progressions and regressions Exercise progressions increase the challenge of a particular exercise. Regressions decrease the difficulty level. Given the common strength and motor deficits we see in the ASD population, knowing how to regress an exercise is a main ingredient for programming.
We start where we start How familiar are the terms “low functioning” and “high functioning”? Hear them often? So do I. How do they influence our fitness programming? Not much, or rather, not much until we ask more specific questions about them.
The PAC Profile Approach Successful fitness programming for the special needs population requires knowing each individual’s three areas of ability: physical, adaptive, and cognitive. 1. Physical: At what level of challenge (progression/regression) will the individual be successful with the exercise? 2. Adaptive: How motivated is the individual to perform a particular exercise? 3. Cognitive: What level of coaching support does the individual need to learn this exercise?
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Think of this as a filtration system. We’re filtering out answers about each ability to individualize programming. It’s not about having 50 different exercises, but about choosing a few and knowing what level of challenge will be the most appropriate. Regressing an exercise and making it simpler could take a few different forms and will differ from one exercise to another. This is certainly not an all-or-nothing situation. We might have an individual who is independent with medicine ball push
throws but needs a full physical prompt to safely perform an overhead press.
Get to the exercises! The beginning of this article mentioned the word “practical,” didn’t it? With all of these considerations and qualities, there is still the question of “what exercises to use?” A bunch of exercises tossed together is not quite a program, so let’s look at the three phases of exercises we use in our programs: 1. Phase One/Warm-Up/Mobility: These are the exercises we use to get the body ready for more challenging activities. They prepare the muscles and joints for action. We use low hurdle steps, bear walks/crawls, cone touches, and overhead walks with a band. A lot of these exercises combine locomotion with hip and shoulder mobility and flexibility. 2. Phase Two/Dynamic Movement: Picking up the pace a bit, these exercises include developing power, stability, and reactive skills. Here we use our three medicine ball throws (push, overhead, and scoop) and rope swings. 3. Phase Three/Strength and Stability: This is where we spend the majority of our session time as these are the exercises that will have the greatest carryover or generalization to activities of daily living (ADLs). Here we use squats, presses, band rows, and pull-downs, along with heavy sandbag carries.
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Programming at home I’ll preface this by stating that I never give out program templates or programming suggestions unless I have a full video assessment of the individual. Again, we’re not just dealing with movement, but with the adaptive and cognitive considerations as well.
to video examples of Warm-Up, Dynamic Movement, and Strength/Stability exercises. We start where we start. Keep that in mind. Exercise is a life skill, which means we have plenty of time to continue shaping and enhancing the physical skills for each individual. It’s all important, but it’s not an emergency. Consistency wins.
For starter home programs, choosing two to three exercises in each category is usually a reasonable plan. Below are links
WARM-UP/MOBILITY Exercise
Purpose
Sets/Repetitions
Video Link
Hurdle Steps
Gait and hip mobility
3-4/4-6
https://youtu.be/WT2LLchw0NM
Cone Touches
Hip flexion and motor planning
3-4/4-6
https://youtu.be/pOV7kJb3lGM
Bear Walks or Crawls
Trunk and shoulder stability + hip mobility
3-5/5-6 forward walk or crawl
https://youtu.be/mrCYHVhowbM
DYNAMIC MOVEMENT Exercise
Purpose
Sets/Repetitions
Video Link
Dynamax Ball Push Throws
Lower body stability + upper body power
2-3/6-10
https://youtu.be/0Q3uz0sAI_8
Dynamax Ball Overhead Throws
Lower body stability + upper body power + thoracic mobility
2-3/6-10
https://youtu.be/LCUTQWfDETE
Dynamax Ball Scoop Throws
Hip hinging + spinal stability
3-5/5-8
https://youtu.be/UEYS4r8AdhM
Exercise
Purpose
Sets/Repetitions
Video Link
Standing Band Rows
Grip and pulling strength (upper body)
3-4/8-10
https://youtu.be/_EfI1_ZLJhA
Overhead Sandbell Presses
Shoulder and trunk strength and stability
3-4/6-8
https://youtu.be/QbaR_916Q6o
Chest Carry
Full body strength
N/A
https://youtu.be/XgMgI5_6CPs
STRENGTH/STABILITY
Eric Chessen, MS, is the founder of Autism Fitness. With extensive backgrounds in both exercise science and Applied Behavior Analysis (ABA), Eric developed the PAC Profile™ Approach, which is used by professionals and parents around the world. Eric is the creator and lead instructor for the Autism Fitness Certification and consults with professionals and parents who want to bring the best possible fitness and adapted physical education programs into the lives of the individuals they care for. He resides in Charlotte, NC, and is available for one-to-one programming. Website: AutismFitness.com Email: Eric@AutismFitness.com
Exceptional Needs Today | Issue 2 | 47
SKILLS FOR LIFE
Engaging, Equipping, and Encouraging the Neuro-Distinct Autistic Adult By J. David Hall, MDiv and Marcelle Ciampi, MEd
“TO THIS DAY, YEARS AFTER MY LATE-AGE DIAGNOSIS OF ASPERGER’S, I PONDER THE PROS AND CONS OF BEING OUT OF THE PROVERBIAL AUTISTIC CLOSET. FROM DARK TO DARK, IT SEEMS, SOME DAYS. THE LANTERN’S LIGHT OF THE INTERIOR IDEALIST LONGING DEEPLY FOR THE WHOLE OF THE WORD TO BE OUT AS TRANSPARENT HUMANS. THIS AUTISM, AS IT IS, THE MERGING INFANCY IN A REALM OF EMERGING NEURODIVERGENT MINORITIES. I WISH FOR THE SINGULAR CONDITION, A SINGULAR STATUS, COLOR, CREED, OR MARKER, TO MAKE WAY TO A RISING OF THE HOLISTIC HUMAN CONDITION. THE UNIQUE INDIVIDUALIZED, UNREFINED, AND UNIFIED PRESENTATION. LIFE TO BE LIVED TO THE BEST OF CAPACITY, IN AN OFTENTIMES CONFUSED WORLD, WHO CANNOT CEASE TO LET GO OF NORMALCY.” —Marcelle Ciampi, Southwest Washington Autism Conference, Closing Keynote
I
have some regrets in disclosing my autism some eight years ago. I harbor an internal discomfort in relation to some individuals knowing I have autism. Even as I am, an accomplished professional delivering keynotes and educational webinars to Fortune 500 companies, there remains a residue—a thin layer of separateness. Something I cannot seem to wash away. Admittedly, some makings are self-invented, assumptions on my part, intermittent second-guessing. As I am still learning to live in my own skin, despite what I think others think. Still unmasking. Still unpacking.
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I sometimes feel as the rough-edged shard, before the sea glass; the foreign element before defined; the colored-in sheep of black. A brokenness to be analyzed, dissected, tested upon, reprogrammed, reformed into something else: someone else. An observer might assume, with my studies in communication and psychology, meaningful interpersonal interactions, and deemed accomplishments, that this interior ache of not being truly seen would dissipate. But it doesn’t. Primarily because some people can’t see past a label.
SKILLS FOR LIFE
tion has served hundreds of autistic adults and their families in the areas of quality life and job coaching, counseling, and consultations. One of the distinctives we offer in coaching autistic adults is found in how we view clients from the moment we meet them until we successfully part ways. For decades, autistic people have been viewed through the deficit-model lens of thinking. Deficit-model approaches, to persons with ASD (autism spectrum disorders) or other neurotypes, hold the perspective of brokenness. Sadly, autistic persons are often viewed as suspect, needing to be fixed, cured, medicated, or provided with some therapeutic solution to make them present as more mainstream (neurotypical).
In my interactions with others who are not autistic, there is this unspoken part of the conversation. This Me and Them. A distinct separation. The atypical autistic and the typical mainstream individual. Me as the neuro-distinct and they the neuro-typical. There are obvious ways that indicate I, or members of the neurominority culture, are being singled out or treated differently. Memories—such as the recommendation that all autistic team members receive emotional IQ training or the necessity of setting aside support teams for every new autistic employee—come to mind. As if the presentation style, ability-level, and support needs of each individual on the spectrum are somehow all the same. As if we are inferior. Other times, it’s just a sliver of a hint. Perhaps a domineering approach or a subtle statement. The unsolicited advice about appropriate social skills. Similar to most individuals on the autism spectrum, I have character traits and attributes as a result of my blended-neurodivergent elements. For example, I have dyslexia, dyspraxia, anxiety, and gifted-intellect. Given my distinct neurology, I often wonder where my autism begins and ends. Many who are autistic or with a similar profile report a similar experience: longings to be accepted, understood, and acknowledged as whole in their being. Some of us find hope and answers in connecting with other individuals and professionals on the autism spectrum—folks who understand our unique neurology and know what it means to live as an autistic. My organization Spectrum Suite LLC collaborates with The Foundation for LGFA (Life Guides for Autistics) to bring support and education to adults on the spectrum, as well as the general population. The Foundation for LGFA, also known as NeuroGuides, is a 501 (c) (3) non-profit organization. Since 2017, the organiza-
This deficit perspective, which often clouds professional approaches to working and interacting with autistic individuals, has unfortunately led to untold numbers of disconnected, isolated, misunderstood, and depressed persons and has resulted in grim outcomes. It’s essential to decrease the autistic person’s sense of isolation and the feeling of not being good enough. Particularly important is that autistic individuals feel connected and enough when we consider the research indicating the autistic population’s suicide rate is reported to be up to nine times the US national average. The methodology NeuroGuides utilizes for one-on-one virtual coaching is surprisingly simple but uniquely complex. We purposely steer away from a cookie-cutter support approach and instead embrace the unique needs of each individual. Meeting them where they are. Our method is to engage, equip, and encourage (E3) to foster transformative life success. We utilize a core tool—a strength-based assessment and application—for everything from social tools to job placement. Our coaching is not to be mistaken for mental health therapy, although there may be some therapeutic benefits for autistic persons in working with a coach. We recognize individualized needs and work alongside our clients to help design a better path toward fulfillment, including socially, occupationally, and relationally. Beyond one-on-one coaching, we offer corporate-level coaching, educational webinars, and virtual Team Forum services to organizations. At the corporate-level, we instruct on a variety of diversity and inclusion topics, utilizing personal stories and our collective experience. The Team Forums involve an engaged community gathering of employees, both autistic and non-autistic individuals, where participants discuss the stressors of life and how we might better equip and encourage one another through connection, tools, and strategies. With the recent global challenges, we also now provide nocost webinars on a variety of topics, such as late-age diagnosis, coexisting conditions, parenting, and relationships. Mr. Fred Rogers said it well: “All of us, at some time or other, need help. Whether we’re
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SKILLS FOR LIFE
giving or receiving help, each one of us has something valuable to bring to this world. That’s one of the things that connects us as neighbors—in our own way, each one of us is a giver and a receiver.” The way we see it, everyone could use connection and help on their life journey, and Neuroguides is ready to come alongside as needed, now and in the future. One person at a time, bringing hope and encouragement to the neurodistinct and beyond.
J. David Hall, MDiv, is a corporate neurodiversity consultant, keynote speaker, autistic, anti-racist, relationship purist, cultural bridge builder, published writer, dad to three autistic persons, and founder and CEO of the 501 (c) (3) organization, Life Guides for Autistics | NeuroGuides. Passionately focused on guiding neurodivergent persons to discover their strengths, gifts, and enjoy meaningful lives, he is a relentless optimist, an encourager who is out to build up individuals to better communities one relationship at a time. He resides in the Pacific Northwest in the South Puget Sound area with his professional and personal partner, Marcelle Ciampi (Samantha Craft), founder of Spectrum Suite LLC. Marcelle Ciampi, MEd (aka Samantha Craft), an autistic author and worldwide advocate, is best known for her writings found in the well-received book Everyday Asperger’s. Her resources have enabled 1000s of adults around the globe to receive an ASD diagnosis. A former schoolteacher, her words have been featured and quoted in multiple books, literature, and research studies. She serves as the D&I Senior Strategist at Ultranauts Inc., an engineering firm with an autism-hiring initiative. A contributing author of Spectrum Women: Walking to the Beat of Autism, she also serves as the founder of Spectrum Suite LLC, co-executive of Life Guides for Autistics, and a contributor and advisor to autism organizations and conferences around the world.
THE VANGUARD SCHOOL Guided Learning through Individualized Spectrums of Growth Leadership
Community
Integrity
Empathy
www.vanguardschool.org admissions@vanguardschool.org
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Resilience
STAYING FIT AND HEALTHY
Ensuring Proper Diet and Nutrition for
Children with Sensory Sensitivities By Eileen Wissell, MPH, RDN/LD
GETTING KIDS TO EAT A WELL-BALANCED DIET CAN BE A CHALLENGE FOR ANY PARENT—BUT ENSURING GOOD NUTRITION FOR CHILDREN WITH SENSORY SENSITIVITIES, ESPECIALLY THOSE WITH AUTISM, CAN BE PARTICULARLY DIFFICULT. BETWEEN THE SENSITIVITIES, AVOIDANCE OF CERTAIN TASTES, SMELLS, AND TEXTURES, AND A MORE INTENSE NEED FOR STRUCTURE AND ROUTINE, MEALTIMES CAN FEEL OVERWHELMING. PROBLEM EATING BEHAVIORS CAN PREVENT CHILDREN FROM GETTING THE NUTRIENTS THEY NEED AND CONTRIBUTE TO HEALTH PROBLEMS THAT EXTEND ALL THE WAY INTO ADULTHOOD.
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ccupational therapy and speech therapy can be used to help children overcome food aversions and expand their food choices. Mealtime behaviors can be improved as therapists and dietitians work together on a plan that is individualized to each child. Following are some tips you can use at home to help your child overcome food aversions, get adequate nutrition, and overcome troublesome behaviors at meals.
Tips for problem eating behaviors Get the kids involved in the kitchen: ¾ Hold “tasting nights” to methodically introduce kids to new flavors and textures ¾ Use therapeutic tools such as stress balls to help children better cope during mealtime ¾ Engage kids in “dirt therapy” (aka gardening), so they can see where food comes from
¾ Devote one meal a week to preparing a dish with your child. Mark the time with a food-related sticker on your visual schedule ¾ Take the time to talk about dishes, how they are made, and what’s in the dish All children are more likely to try a meal they helped to make, and the same is true for children with autism spectrum disorder (ASD). Keep in mind, it may take many repetitions before a child will eat a food without prompting. Start slow with your child by making just one of your child’s favorite dishes together and then gradually branch out as your child becomes more comfortable in the kitchen. Use a cookbook with plenty of large, colorful pictures of the finished recipe to heighten interest. You can also have your child set the table one night a week and discuss proper mealtime etiquette and why it is important. The more familiar your child becomes with different smells, flavors, and textures, as well as social rules and rituals around eating, the easier mealtime
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will become. A bonus: chopping, mixing, and carrying dishes all count as “heavy work” and increase fine motor skills. Use these special times to introduce healthy alternatives to your children and use rewards to encourage experimentation.
Keep mealtime quiet and calm One of the best ways to help your sensitive sensory child reduce problem eating behaviors is to make mealtime as simple and routine as possible. Most children with ASD deal with some level of sensory processing difficulty or sensory sensitivity. Combined with a dislike for certain tastes and textures, a noisy, overly-lit dinner table can make problem eating behaviors even worse. To make mealtime more peaceful for everyone, set the mood as you set the table. If you have a dimmer in your dining room, lower the lighting in the room. Even better, replace the bulbs in your dining room and your child’s bedroom with full-spectrum lights. Play low, calming music as you prepare dinner and as your family eats. Finally, make it a game. To reduce the stress and the stakes, practice setting the table with your child, passing dishes, and filling water glasses when it’s not mealtime to get your child used to your routine. Tell social stories, using both pictures and words, to anticipate what will happen at the dinner table.
Don’t be afraid to supplement Reducing food aversions is the best way to boost your child’s nutrition. Of course, sometimes, even when you get your child more involved and invested in mealtime, and you model proper mealtime behaviors, the food sensitivities don’t go away. There may be foods, or entire categories of food, your child still refuses. Parents of kids with ASD should be proactive about supplementation, working with your family’s primary doctor or a licensed and registered dietitian/nutritionist to decide which supplements will help make up for nutrient shortfalls. In addition to a high-quality multi-vitamin, some of the supplements that have been demonstrated to reduce the problem behaviors and other symptoms associated with ASD include Omega-3 fatty acids, Vitamin D, Vitamin C, magnesium, and Vitamin B6. Many kids with autism also deal with digestive challenges due to lack of fiber intake and destruction of
good gut bacteria from medication. Consider adding a good probiotic and fiber source to your child’s supplement regimen as well. The best approach is to introduce one supplement at a time and monitor how your child reacts to it (if at all). If your child won’t swallow a pill, look for a liquid or gummy supplement instead.
Avoid artificial additives While no scientific studies exist that definitively link ASD to environmental toxins or processed foods, there is a mountain of evidence that details health problems with overconsumption of highly-refined snack and junk foods. While a parent cannot force a child to eat anything, modeling healthy eating and keeping foods with low nutrient density out of the home is a step in the right direction. Whenever possible, choose whole, organic foods, snacks, and drinks, and avoid artificial flavorings, sweeteners, and food coloring. A bonus: crunchy snacks like apple slices, carrot sticks, and organic granola provide heavy proprioceptive input for the jaw and increase oral motor skills. RESOURCES Strickland, E. (2009) Eating for Autism. De Capo Lifelong Books. http://www.eatright.org/resource/health/diseases-and-conditions/ autism/nutrition-for-your-child-with-autism-spectrum-disorder-asd http://www.todaysdietitian.com/newarchives/010713p46.shtml
Eileen Wissell, MPH, RDN/LD, works with Springbrook Autism Behavioral Health in Travelers Rest, SC, and has been a registered dietitian for over 25 years, working with children and adults in both private and public health. She has been actively involved in helping individuals and families improve their health and reduce the risk of disease by learning how to plan for healthy eating and conquer negative eating behaviors. If your child needs help managing the maladaptive behaviors associated with autism, contact Springbrook at 864-834-8013 for a free, confidential consultation. Through our program, many children have been able to reduce problem behaviors and gain social and life skills. Website: https://springbrookautismbehavioral.com/
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Exceptional Needs Today | Issue 2 | 53 ADVERTISEMENT
PARENTAL SUPPORT
What Every Gifted Student Wishes Their Parents Knew About Them
By Ron I. Malcolm, EdD YOU JUST RECEIVED NEWS YOUR CHILD NOW QUALIFIES AS A “GIFTED EDUCATION” STUDENT. YOU ARE BEYOND THRILLED YOUR CHILD HAS SUCH A HIGH IQ. YET, MANY STUDENTS IDENTIFIED AS “GIFTED” MAY ENCOUNTER ISSUES RELATED TO SCHOOL AND THEIR “GIFTEDNESS.” THESE ISSUES MAY REQUIRE ADDITIONAL SUPPORT FROM PARENTS. HERE ARE 10 SIMPLE THINGS YOUR GIFTED CHILD LIKELY WISHES YOU KNEW ABOUT THEM.
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PARENTAL SUPPORT
1. I need to be shown your love does not hinge on my achievements Many times parents will want to celebrate the academic success of their gifted child. They may have placed first in the school science fair, received top academic honors at their school with outstanding grades, or even won the local spelling bee. There is nothing wrong with celebrating your child who is academically excelling at school. However, children who are gifted want to be loved “unconditionally.” They don’t want love from their parents to only be demonstrated during times of academic achievement. Don’t only tie your praise to events in which your child excels. Show you love them regardless of superior academic ability or failure, simply because they are your child. Express your care and pride for occurrences beyond just high achievement, and they’ll understand your love for them is unconditional.
2. I need to spend part of my school day with other gifted students It is important that your gifted child has access to other gifted children during the school day. While they need to learn how to interact and communicate with people who are not gifted on a daily basis, it is equally important they
are in a learning environment for part of their school day with other gifted students. It will allow them a unique opportunity to work and interact with other children who may share some of their interests and struggles. It allows your child to fully comprehend they are not the only gifted child at their school. They have peers who share similar experiences.
3. School may be boring Getting 100 percent on school assignments does not mean gifted children are enjoying school or excelling. It is also not a measure of growth. A gifted student may begin a class in the fall of a school year with a 98 percent knowledge level. By May of the same school year, they may exit the class with a 100 percent knowledge level. Many people want to celebrate the high achievement your gifted child has obtained. However, it really only shows your gifted child made two percent progress over a nine to 10 months period of time. Gifted children want to explore, be challenged, and ask lots of questions. It is your responsibility as a parent to ensure your school program is meeting the advanced educational needs of your gifted child. If they are not being challenged at school, they may just want to start staying at home and could potentially become isolated.
4. Don’t assume I want to skip grades at school Your gifted child may have the academic ability of an advanced adult but still only be 10 years old. Even though they may easily handle high school algebra or science
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PARENTAL SUPPORT
classes, they may not have the same social interests older teenagers do. There are ways to meet their advanced academic ability without placing them with older students who they may not relate to or with whom they cannot form friendships.
5. Not everything in my life revolves around my giftedness Everything your gifted child does in life should not revolve around just their academic abilities. They may want to do other activities children their age are also doing. They should not be worried about their ACT scores when they are in the fifth grade. Let them join Boy Scouts, become part of a swim team, bake cookies, join the school band or choir, or simply hang out with their friends. Sometimes they may just want to be a kid and play a video game instead of reading a book.
6. Understand I may be bullied at school While adults such as parents and teachers often recognize and appreciate “giftedness,” same-age peers may not. Your gifted child at school may be bullied. They may get called names or even laughed at for demonstrating their superior academic abilities. Gifted children can also
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get teased for hanging out with other gifted children at school or for being grouped with them in the regular education classroom. Some students may be jealous of their academic abilities and begin to make their life at school difficult. Maintain open communication and conversations with your gifted child about their school day.
7. Be aware of my unique interests There are times your gifted child may have a very narrow focus on a particular subject matter. Parents should not assume all gifted children are interested in calculus and Shakespeare. They may suddenly spark an interest in geology, foreign affairs, different languages and cultures, the stock market, medicine, etc., at a very early age. They may require additional support for developing these interests even if it seems odd to others that all they want to talk about is dinosaurs, stocks, or recent medical trends.
8. I’m not perfect! Your gifted child needs to know it is absolutely fine to make mistakes. No one is perfect, and their diagnosis of “giftedness” doesn’t mean they’ll achieve at everything they do. Making a mistake just means you’re going to learn more about the process and do better the second time
PARENTAL SUPPORT
you attempt to tackle it. When your gifted child makes an error, avoid making statements such as: “I thought you were gifted,” or “For someone who is supposed to be so smart, I can’t believe you just did that!”
9. Don’t allow me to become arrogant Gifted children need to understand being gifted doesn’t mean they are “smarter” than everyone else. There are many children in school with average IQs who excel academically through hard work and dedication. Being gifted just means they have the ability to process information quicker than most people. They need to understand that while they may only need to be presented with information in class once, there are others in the classroom who don’t comprehend new concepts the first time they are introduced to them.
10. I don’t always want to be the class tutor Your gifted child may finish their classwork in a much quicker manner than their same-age peers. Many of them want to use their free time to read, investigate a topic of interest, or work on other class assignments. Many teachers will ask your gifted child if they are willing to tutor other students in the class who are struggling. Many gifted children are too polite to say “No,” to the teacher and
feel locked into the class tutor’s role. Remind your gifted child’s teacher that unless your child wants to tutor others, you’d prefer they be allowed to use that time to work on other interests they want to develop. Ron 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. His educational background includes a bachelor’s degree of arts (BA) in English from Acadia University, Nova Scotia, Canada; a bachelor’s degree in Education (BEd), Special Education from Acadia University, Nova Scotia, Canada; a master’s degree in Education (MEd), Deaf Education from L’universite de Moncton, New Brunswick, Canada; a master’s degree of arts (MA) in Counseling from Gallaudet University, Washington, DC; a master’s degree of science (MS) in School Administration from Fort Hays State University, Hays, Kansas; a doctorate in education (EdD), School Leadership from Northern Arizona University, Flagstaff, Arizona; post-doctorate studies in autism spectrum disorders at Northern Arizona University, Flagstaff, Arizona; and post-doctorate studies in positive behavior supports at Northern Arizona University, Flagstaff, Arizona. He has worked for the past 36 years in the field of Deaf Education. He has a profound bilateral sensorineural hearing loss and wears two Phonak hearing aids.
the ultimate lifeline for those who love the labeled.
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Exceptional Needs Today | Issue 2 | 57
EXCEPTIONAL EDUCATION
EVERYTHING YOU WANTED TO KNOW About Intelligence Testing that No One Would Tell You
By Marcia Eckerd, PhD I FIND MOST PARENTS ARE CONFUSED BY THE INTELLIGENCE TESTING ADMINISTERED TO THEIR CHILDREN. IT’S EASY TO MISUNDERSTAND THE RESULTS IF YOU DON’T UNDERSTAND HOW THE TEST IS STRUCTURED AND YOU OVER-FOCUS ON THAT MAGIC IQ NUMBER. IN ADDITION TO UNDERSTANDING THE TEST ITSELF, YOU NEED TO KNOW A LITTLE ABOUT SCORING AND STATISTICS AND SOMETHING ABOUT PUTTING IT TOGETHER.
T
he Wechsler Intelligence Test for Children (WISC-V) is the “IQ” test for children six to 16. It’s considered the “gold standard” by most evaluators. It gives an overview of strengths and weaknesses in multiple areas and generally provides reasonable expectations of the child’s school performance.
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For children over 16, the Wechsler Adult Intelligence Test can be used (WAIS-IV), and for children two years and seven months old through seven years and seven months old, the Wechsler Preschool and Primary Test of Intelligence (WPPSIIV) can be used. There’s an age overlap; a bright six-year-old might get the WISC-V while a child suspected to have some
EXCEPTIONAL EDUCATION
weaker skills might get the WPPSI-IV, and a 16-year-old with strong skills might get the WAIS-IV while another student might get the WISC-V. Your child’s age isn’t the only factor in deciding which test to administer. It’s important to understand how the WISC-V (or any of the Wechsler tests) is structured. The WISC-V is actually made up of 10 subtests, yielding five Index Scale scores. Each Scale score measures a unique ability. There are five Index Scales, each consisting of two subtests measuring different skills within the overall domain.
Name of WISC-V Index Scale Abilities Measured
Verbal Reasoning
Knowledge of words and how to apply them in verbal concept formation, reasoning, and expression
Visual Spatial
Seeing visual details, understanding spatial relationships and construction abilities, and seeing the relationship between parts and a whole, involving visual and motor abilities
Fluid Reasoning
Seeing a meaningful relationship among visual objects and applying that knowledge with conceptual reasoning
Working Memory
Attention, concentration and holding information in mind, and being able to use it
Processing Speed
Speed and accuracy of visual scanning and identifying visual objects, short term memory, and visual-motor coordination
These scales are combined to yield the Full-Scale IQ. Many parents focus on the Full-Scale IQ, but it can be a meaningless number if the scales are inconsistent. Let’s say the Full-Scale IQ is average. It could mean that all the scales are in the average range, or, with an extreme example, you could have a superior Verbal Comprehension Index Scale and a low average or borderline Visual Spatial or Fluid Reasoning Index Scale if
verbal skills were much stronger than visual skills. It’s like saying your temperature is average if your hair is on fire and your feet are in a bucket of water. It’s important to know the Index Scale scores and what they measure to understand relative strengths and weaknesses and how they impact each other. A child with a superior verbal IQ might struggle in school with material visually presented (maps, charts, graphs) if the visual scales are lower. A child with a weak working memory score might have problems holding onto information verbally or visually presented, so if a teacher lectures or discusses material not in the book, this child may perform more poorly than expected. The child with poor working memory or processing speed might have trouble taking notes, which necessitates listening, holding information in memory and writing all at the same time. You also want to look at the subtest scores within each Index Scale score: are they consistent? As an example, the Verbal Comprehension Index Scale includes two subtests: Vocabulary, which tests word knowledge, and Similarities, which tests the ability to form abstract concepts by understanding what two words (say bird and dog) have in common (both are animals). A child with strong word knowledge (perhaps good at memorizing words) who struggles with abstraction could have a high average Vocabulary subtest score, a low average Similarities subtest score, and an average Verbal Comprehension Index Scale. That average Verbal Comprehension score tells us very little; this child might be very good at memorizing information but struggles to use it conceptually. The obvious question is, how can you know if the difference between scales or subtests is significant? IQ scores and Index Scale scores are standard scores, with a mean of 100 and a standard deviation of 15 scaled scores. Subtest scores have a mean of 10 and a standard deviation of three. The mean is the score considered average for your child’s age, and the standard deviation is how many points you need before you consider the difference between scores to be significant; a difference of more than a standard deviation is significant and should be examined. Most schools use the standard deviation to determine the description of the score, so a score between 100 and 85 is considered in the average range.
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EXCEPTIONAL EDUCATION
Some psychometric tales use a more stringent limit; 90 to 110 is average, for example. I use the psychometric table, so here’s a chart to guide you. This chart is based on standard scores, so those come out evenly, and the other scores have some overlap at the ends. Standard score
Percentile rank
Scaled score
Description
130—150
9—99+
16—19
Very Superior
121—129
92—97
14—15
Superior
111—120
77—91
13—14
High Average
110—90
75—25
8—12
Average
80—89
9—23
6—7
Low Average
7—79
2—8
4—5
Borderline
Below 70
Impaired
To understand your child’s WISC-V, you need to know the scores and not just the labels. Here’s where it gets interesting. If standard scores are consistent across indices and subtest scores are consistent within an Index Scale, that’s going to be a reliable estimate of the child’s ability. When the scores are inconsistent is when the difficulty occurs. Sometimes schools average scores together, which masks strengths and weaknesses. Obviously, the Full-Scale IQ is only meaningful if the Index Scales are consistent; as standard scores, that means they have to be less than 15 points different. You can’t go by descriptions like “average,” “high average,” or “low average” alone.
combining the numbers or just looking at labels. If there’s a significant difference, even if it’s between subtests, you want to understand what skills are being tested and if that might underlie difficulty for the child. A significant difference among Index Scores might indicate ADHD, LD, or some variation in the rate at which skills are maturing. Even a weakness in a subtest—for example, verbal conceptualization—could have a significant impact on your child’s performance and frustration level. One caveat is that there’s more to life than intelligence tests. Speech and language therapists look at language skills in depth, academic testing picks up reading, math, or writing difficulties, and tests like the Behavior Rating Inventory of Executive Functions (BRIEF) rate those all-important executive functions. Many bright children have challenges not evident on the WISC-V. The bottom line is there’s a lot of information in the WISC-V if you know to dig for it and ask questions, rather than just accepting, “He’s in the average range.” Understanding the structure of Index Scale scores and that there are subtext scores lets you look at domains separately so you can think about learning style. Is your child a better auditory or visual learner, or does some combination (or hands-on, using visual-motor reasoning) work best?
You also need to know the range of a standard score goes above and below the “middle” of the word describing a score. A standard score can be 85 and be considered “average” by a school, and another score can be 110 and still be called “average,” but they are more than 15 points apart. In that case, even though both are labeled “average,” you might ask about the relative difference. On the other hand, scores close to each other aren’t that different, so a score of 80 and a score of 90 aren’t too different even if one is called “low average” and the other is called “average.” The bottom line is you want to look at the scores—the Index Scale scores and the subtest scores—to see if any Index Scales differ by 15 points or if subtests differ by three points to see if a student has strengths and weaknesses obscured by Marcia Eckerd, PhD, received a BA from Yale University, Magna Cum Laude, and a PhD from City University of NY. She has been in private practice since 1985 and has extensive training in neuropsychological evaluation, as well as providing therapy and consulting for patients of all ages with LD, ADHD, and autism spectrum disorder (ASD)/Asperger’s syndrome. Marcia writes and speaks extensively on ASD, executive functions, social skills, and anxiety/mindfulness. She has been appointed by the State Legislature of CT to serve on the CT ASD Advisory Council and is on the Clinical Advisory Group of AANE.org (Asperger/ Autism Network). She serves on the Professional Advisory Board of Smart Kids with LD as well as the community medical staff at Norwalk Hospital. She’s written multiple professional peer-reviewed journals on the diagnosis of autism and has also contributed to Autism Spectrum News, Autism Parenting Magazine, Psych Central, and Psychology Today.
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MY WORD
AUTISM: When the Impossible Becomes Possible By Julie Hornok MY DAUGHTER CAREFULLY APPROACHED MY CAR WITH HER HANDS FULL. TEARS WELLED UP IN MY EYES, THREATENING TO EXPOSE MY EMOTION. I NEVER THOUGHT THIS DAY WAS POSSIBLE, BUT BECAUSE SHE HAD COME SO FAR, IT WAS EVEN SWEETER.
“H
i! My name is Lizzie! I will be your carhop today!” she said cheerfully while grinning ear to ear. She handed me my slushie and fried mozzarella sticks. I tipped her way too generously and told her how proud I was of her. It was hard to believe this was the same girl who, at two years old, displayed every sign of autism and was given an on-the-spot diagnosis on our first visit with the developmental pediatrician. According to the latest numbers from the Center for Disease Control (CDC), one in 54 children will be diagnosed with autism in the United States. Every one of those parents will hear the life-changing words, “Your child has autism.” Every one of those parents will feel their world spin out of control and come crashing down around them. Every one of those parents will, at times, feel desperate, confused, and alone...just as I did a little over 16 years ago. When Lizzie was diagnosed, it was not the rare type of savant autism seen celebrated on TV or in the movies. She didn’t display special talents or share insights that blew our minds. She threw hour-long tantrums because she could not communicate even her basic wants and needs. She wandered aimlessly around our home lining things up, flapping her arms, and making screeching sounds. She had no understanding of danger: she would run in the street, jump off a high ledge, or immerse herself in water without any understanding of the consequences. She banged her head on the ground in frustration and bit us when we tried to change her diaper or put her in her high chair. She didn’t answer to her name or respond in any way when we tried to communicate with her. Her eyes were glazed over, and even though her body was present, her mind was somewhere else. She was frustrated and unhappy, and we were exhausted. My daughter had disappeared into the black hole of autism, and I didn’t know if we would ever be able to reach her.
That is the autism most families are living with. To say autism has pushed me to the brink would be an understatement. It was more like I dug my heels in as autism slowly scooted me to the edge of a cliff and left me hanging for dear life. People tried to reassure me by telling me no one was to blame, but an enormous weight had been placed on my shoulders, and even if I hadn’t caused it, it was still up to me to figure out how to make it better. Day after day, together with a wonderful support team, I willingly jumped into autism’s black hole in an effort to pull her out inch by inch. I woke up morning after morning with bloodshot eyes from the late-night hours spent on the Internet researching. I facilitated a 30-hour-a-week home therapy program focused on her behavior, speech, and sensory needs. I hired therapists, immersed myself in learning the ins and
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MY WORD
As the days and years went by, Lizzie continued to gain language, the ability to communicate socially and understand how to work well with others to accomplish mutual goals. outs of the complicated step-by-step programs, and carried the concepts through the rest of our day when there wasn’t a therapist present. I changed her diet and ran every medical test possible to make sure we weren’t missing something. When we ran out of money, we borrowed from family, applied for grants, and went without to make sure her therapy wasn’t interrupted. I lived in an alternate reality centered around pulling my daughter out of autism’s abyss. I know the real world kept spinning around me, but my hyper-focus on my daughter kept me from caring. I pushed everyone away. A mother is only as well as her sickest child. That was my reality for many long, difficult years. There were no shortcuts or magic bullets. The progress was seen through the daily work. When Lizzie was about four years old, I was sitting at a table with her, trying to entice her into painting a house, and as usual, she refused to acknowledge me. I instinctively picked up the paintbrush and playfully painted her nose. She looked up at me with surprise, and our eyes met. For an instant, I could
see her soul. The interaction between us caused the hairs to stand up on my arms. Tears streamed down my face as I felt a connection with my little girl for the first time since she was a baby. I light-heartedly tried painting different parts of her body until she stood up and walked away. I had seen the light in her eyes return, even if it was only for a second. She was telling me there was hope. As the days and years went by, Lizzie continued to gain language, the ability to communicate socially and understand how to work well with others to accomplish mutual goals. She is smart, kind, and works harder than anyone I have ever met. Now, at 18 years old, Lizzie still very much has autism, but it is a beautiful watered-down, functional version. She is a cheerleader at school, has friends, and is looking at colleges. We have always loved, adored, and seen her worth exactly as she was, but now she is actively striving to become the best version of herself. And that is all I would ever want for any of my children.
Julie Hornok is an award-winning author, speaker, and advocate for autism. She co-founded the non-profit, Labeled and Loved, to bring hope to special needs moms through online and in-person community-building events. Her book, United in Autism: Finding Strength Inside the Spectrum, is available at UnitedinAutism.com or anywhere that sells books online. Facebook: https://www.facebook.com/unitedinautism Instagram: https://www.instagram.com/unitedinautism/
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Kate Makes it Great! LEARNING STRATEGIES
Kate’s Top Two Tips for Toilet Training Children with Different Abilities By Kate C. Wilde
N
o matter how daunting it seems to you or how many times you may have attempted toilet training in the past, you have nothing to lose by giving your child the opportunity to gain this incredibly life-affirming skill. I say life-affirming because this skill gives our children who fall somewhere on the colorful spectrum of developmental delays many hidden delights. An independence over their own bodies abled persons take for granted. A boost to their self-esteem and confidence. More options in educational and recreational settings. From my 30 years of helping educators and parents toilet train children from two-years-old to 30 and beyond, here are my top two tips.
1. Be inspirational: Make it fun! Yes, toilet training can be fun! There is so much research that confirms we learn skills for life when we are having fun. If our children are having fun, they will go the extra mile to do what is challenging. If we are having fun, we will more likely stay with it. How do we make it fun? • Bring the fun to the toilet Instead of quietly taking yourself off to the toilet, make a whole Broadway production of it. Announce it to the entire household. Tell everyone what you are about to do. Afterward, have your partner, your child’s siblings, or
whomever else is in your home come and clap, give you a high five, or bang a drum for using the bathroom. Create “I used the toilet today” certificates for each member of the family. Present them with great fanfare at the dinner table. Using the bathroom for everyone in your household is now a cause for celebration. It is okay if your exceptional child does not seem to notice at first—you do not have to get them to celebrate you. The idea is to start making using the toilet an event in your house. They will soon be noticing and experiencing this new fun vibe around using the toilet! • Use your child’s motivations What does your child like the most? Is it Spider-Man or Paw Patrol? Is it vacuums or fans? Is it watching a piece of string or ribbon dangle in front of their eyes? Is it airplanes, helicopters, rainbows, the alphabet, or numbers? Road signs or subway maps? Whatever it is your child is into, make that a central part of your toilet training. Here are some ex-
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LEARNING STRATEGIES
amples of what happened when some amazingly creative parents and educators did just that. One child loved anything to do with airports. His mom created a runway that went down the hallway into the bathroom and ended at the toilet. Another decorated their child’s potty with hundreds of yellow ribbons; one put a fan next to the toilet, while another covered their otherwise plain potty with the rainbows their daughter loved. This inspired each of these children to want to spend more time around the toilet or the potty. This not only made toilet training more fun for each child but sped up the process too. We move towards what we like the most. Make the toilet or potty a point of interest for your child by using their unique motivations. • Give control: The toilet training superpower This is so key. You can make the toilet fun by doing what I suggest above and then sap all the fun out of it by adding pressure, pushing, or force to the process. There can be a lot of outside pressure from family members, educators, and therapists to toilet train your child. If you take this on, it can spill over to your child, resulting in you pushing or even physically forcing your child to sit on the toilet. Parents have shared with me that they thought this would speed up the process for their child and make it a little easier. However, it mostly has the opposite effect. When we feel pushed, we tend to tense up; when we are tense, as I am sure you can all relate to, it gets harder, not easier, to pee. If we force our children to sit on the toilet, they will
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associate the toilet with this force, making it something to avoid. As long as the toilet remains something our children want to move towards, we have all the opportunities we need to help them master its use. You can do this by respecting their “No.” If they say or physically indicate they do not want to be near or sit on the toilet, respect that; let them know you heard them, and you will try again later. Let go of any timeline or pressure from outside sources. This is not their child; this is not their journey. What matters is the fun and ease between you and your child. This is the way forward.
2. Build interoceptive awareness Interoception is often referred to as the “eighth sensory system.” It is the ability to feel the inside of your own body, listen to the messages it gives you, and take action. For example, if our children are to successfully learn to use the toilet, they must first feel when their bladder is full. Then they must understand this feeling means it is time to use the toilet. This is called interoceptive awareness. The great news is interoceptive awareness can be increased and improved just by putting our awareness there. You will want to build this awareness if: • Your child does not notice they have just peed or pooped. • They do not show signs they are about to pee or poop (like a potty dance or a poop posture).
LEARNING STRATEGIES
• They will go to the bathroom and use the toilet if you suggest it and take them. But they do not initiate it themselves or go on their own. Building interoceptive awareness will make the process much easier. You can do this by: • Taking off the diaper Diapers today are wonderfully-advanced. They are built to be an anti-interoception device. The whole point of a diaper is to make it so you don’t feel it when you pee. If we want to build interoceptive awareness, it makes sense the first place to start is to take off the diapers. Introduce new and fun big girl or big boy underwear and sweatpants that can easily and quickly be pulled down. Use some groundsheets to cover the carpets and sofas that your child may be sitting on while they are diaper-free. This way you do not have to be concerned about ruining your carpets or furniture and can keep a relaxed, easy attitude when your child has toilet accidents. • Modeling listening to your own body signals You can do this by standing still and put on what I like to call an active listening face. You can do this by slightly tilting your head with a curious expression on your face. It helps if you are really listening to your body. While you do this, touch your lower abdomen where your bladder feeling is and describe how it feels. Then go to the bathroom in the fun ways suggested above. • Bringing body listening into your play with your child If your child loves to play with figurines, have one of them tell you they have a feeling in their body and need to pee. Then have the figurine use the toilet. If your child likes plastic letters, that’s another way they can tell you they need to pee. • Explaining and showing them what is happening in the body One amazing mom helped her 26-year-old son use the toilet independently by helping him understand what was happening inside his body. She got a balloon and showed her son how his bladder fills up with fluid, and once it
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
filled, he needed to release it into the toilet so it could fill up again. As she explained this, she filled up the balloon with water. This visual, along with an age-appropriate detailed explanation, really helped her son recognize his body messages and gain independence. The good news is that learning to inspire your child through fun and building your child’s interoception will serve your child in countless ways far beyond the toilet. Have fun and enjoy your journey to toilet independence. If you want more, you can read my whole toilet training plan in my book, Autistic Logistics: A Parent’s Guide to Tackling Bedtime, Toilet Training, Tantrums, Hitting and Other Everyday Challenges. (Second edition is coming out later this year). 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/
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