Exceptional Needs Issue 3
T O D AY
BUILDING A
PAM MINES
SUPPORT
JP IS…
SYSTEM
JUST FINE!
UNDERSTANDING A MELTDOWN: THE KEYS TO SELF-REGULATION
WHY IS MY CHILD ENGAGING IN SELF-INJURY? What Happens When Student Services End?
Helping Our Special Needs Community Find Friends
NE WH UR AT O-C IS RA A SH ?
TOP WAYS TO IDENTIFY AND MANAGE OCD
A Special Needs Plan can help answer these questions: 1. Who is going to take care of your child after you are gone and where will they live?
2. How much will that care cost and how are you going to pay for that care? 3. Do you have a special needs trust and do you know how much money you will need in it? How are you going to fund it? How are the funding instruments taxed when you die? 4. What government benefits are available to your child and how do you apply for them? 5. What is the Medicaid waiver and how do you apply for it? 6. How will you communicate your plan to family members?
www.ASpecialNeedsPlan.com Phone (704) 326-7910 Securities and investment advisory services offered through qualified registered representatives of MML Investors Services, LLC, Member SIPC. 4350 Congress Street, Suite 300, Charlotte, NC 28209. 704-557-9600. A Special Needs Plan is not a subsidiary or affiliate of MML Investors Services, LLC or its affiliated companies.
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EXCEPTIONAL NEEDS TODAY
exceptionalneedstoday.com
Contents
May 2021, Issue 3 CELEBRATING PARENTHOOD: FROM ONE SPECIAL NEEDS PARENT TO ANOTHER Deanna Picon
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Join Deanna as she shares the kind of personal letter most special needs parents would appreciate receiving from a friend, filled with optimism and valuable advice.
THE VALUE OF PARENTAL FRIENDSHIPS INSIDE AND OUTSIDE THE EXCEPTIONAL NEEDS COMMUNITY Amy Nielsen
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Find new ways to fulfill your own social cravings, including those who may not share your experiences as an exceptional needs parent.
SEEING AND LOVING LYDIA Melissa Dean
Hear from a lovingly protective mother about her journey with Lydia, a delightful young teen with Down syndrome.
16 AUTISM SOCIETY OF AMERICA LAUNCHES CAMPAIGN TO WEAVE AUTISM ACCEPTANCE INTO OUR SOCIAL FABRIC Amy KD Tobik
18
07
STUDENTS ON THE SPECTRUM HAVE IDEAS ABOUT INCLUSION IF WE WILL LISTEN
JP IS…JUST FINE!
Dr. Stephanie C. Holmes, BCCC
Pam Mines
Meet the extraordinary woman who initiated JP’s Law to alert police officers when an individual has autism or an intellectual disability and learn how she continues her work as an advocate and uplifting voice of support.
24 UNDERSTANDING A MELTDOWN—THE KEYS TO SELF-REGULATION
Learn about a meaningful shift in terminology to empower autistic individuals in an exclusive interview with Christopher Banks, Autism Society of America President/ CEO.
27 WHAT CAN WE DO AFTER A SPECIAL NEEDS DIAGNOSIS?
Marcia Eckerd, PhD
Understand how a meltdown differs from a tantrum, how to identify possible triggers, and the importance of allowing the use of individualized stims and other coping methods when overwhelmed.
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Karen Kaplan
Are you feeling overwhelmed after a diagnosis? Read on for a twofold answer to the question, “What now?”
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Listen to the thoughts and perspectives of actual students on the spectrum as they share their suggestions for implementing their ideas of inclusion in school.
30 WHAT IS SO IMPORTANT ABOUT EXECUTIVE FUNCTIONING COMPETENCIES? Chris Abildgaard, LPC, NCC, NCSP
Learn how a person’s executive function skills may be lacking and why carers should work with the individual to practice and build on them.
33 EXCEPTIONAL PRODUCTS AND TOOLS Learn how Peace River’s 8th generation Liposomal Formula CBD tincture can deliver up to 86% CBD to the bloodstream and with almost immediate absorption.
34 NEW MOBILE APP HELPS PEOPLE WITH DIFFERENT ABILITIES DEVELOP AUTHENTIC FRIENDSHIPS Ron Sandison
A look into Juliana Fetherman’s new mobile app called MAF created specifically for individuals with different abilities to find and build friendships.
36 TOP WAYS YOU CAN IDENTIFY AND MANAGE OBSESSIVE-COMPULSIVE DISORDER J. Edwards Holt
Do you or someone you love experience unwanted obsessive-compulsive behaviors? Read on for a description of OCD and management options that may help.
39 KATE MAKES IT GREAT! KATE’S ADVICE FOR ENCOURAGING SPEECH AND MANAGING TEMPERS WHEN THERE ARE DIFFERENT ABILITIES Kate C. Wilde
See how our columnist Kate responds to three questions from moms worldwide concerning speech therapies and managing tempers.
42 SCHOOL PHYSICAL THERAPISTS MAKING THEIR IMPRINT JC Ellinger
Consider the necessity of school support staff in assisting exceptional needs children and the benefit of maintaining dialogue between these staff and parents through the example of one exemplary physical therapist.
44 KEEPING A DIABETIC CHILD INCLUDED AND SAFE DURING THE SCHOOL DAY Ron I. Malcolm, EdD
Learn 10 helpful tips for sending a diabetic child to school to ensure their safety and inclusion.
47 WHAT HAPPENS WHEN STUDENT SERVICES END: THE VANISHING IEP Toby Tomlinson Baker
Learn how higher education institutions can improve the potential disparity between high school and postsecondary student services.
49 GOVERNMENT BENEFITS FOR SPECIAL NEEDS—FACTS YOU NEED TO KNOW Ryan F. Platt, MBA, ChFC, ChSNC, CFBS Receive information on the more universally applicable government benefits and how to avoid accidentally disqualifying yourself or your child with exceptional needs.
51 BEING AN EXCEPTIONAL PARENT: NINE WAYS TO NURTURE YOUR OWN SPECIAL NEEDS Tasnuva Sarwar Tunna, PhD
Empower yourself with motivation and advice from a neurodivergent autism mom who has successfully pulled herself from her darkest days.
54 PLANNING FOR A LIFETIME: KEY CONSIDERATIONS FOR PARENTS OF SPECIAL NEEDS CHILDREN Jeff Vistica, CFP™, ChSNC®, AIF®
Review five essential considerations, along with resources, for parents of special needs children who require a lifetime of care.
56 HAL’S BOOKS, OUR STORY Jane Hawkes
Join the mother of a young autistic man as she shares the journey of creating, illustrating, and publishing two children’s books with her son and children’s author Jude Lennon.
58 ESSENTIAL SOCIAL SKILLS AND COMMUNICATION FOR ALL TEENS Kirt Manecke
Read on for advice on how to improve social skills through discussion and roleplay.
60 MAKING OUTINGS EASIER WHEN CHILDREN HAVE EXCEPTIONAL NEEDS Diana Romeo
Learn tips from an autism mom on ways to occupy a special needs child who struggles with impatience or discomfort when out and about in town or at restaurants.
62 YOU’RE DOING GREAT! WAYS TO REWARD POSITIVE BEHAVIOR William Killion, PhD, BCBA
Discover the value of immediate positive reinforcement and possible options for implementing a reward system for a special needs child.
65 WHY IS MY CHILD ENGAGING IN SELF-INJURY? Fady Beshara, MSc, BCBA
Discover four different functions of behavior related to self-injurious behaviors and the value of developing a treatment plan with a Board-Certified Behavior Analyst.
67 EXCEPTIONAL BOOKS
Diana Romeo provides an honest look into a mother’s experience raising her autistic son.
68 HELPING OUR SPECIAL NEEDS COMMUNITY FIND FRIENDS AND RELATIONSHIPS Joseph Pangaro, CPM, CSO, MOI
Consider ways of helping a loved one find meaningful and potentially romantic relationships safely and responsibly.
71 YOUR CHILD IS HAVING A NEUROCRASH—WHAT IT IS, HOW TO SPOT IT, AND WAYS TO PREVENT IT Raun K. Kaufman
Discover what causes a Neuro-Crash and ways to address the root of the problem rather than merely suppressing its symptoms.
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 Editorial Intern: Ben Weingart 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 Cover Photo Cami McCue
75 NATURE NOTES THE POWER OF PLAY: 10 LEARNING BENEFITS OF OUTDOOR PLAY DURING DISTANCE LEARNING Caitlin Koob, OTR/L and Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA Caitlin Koob joins Amy in sharing the many benefits of supporting and encouraging your child to play in the great outdoors.
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 3 | 5
From the Editor’s Desk
I
sn’t it such a fantastic feeling when you meet someone driven to make change for the better? Their dedication inspires you—it encourages you. As editor-in-chief of Exceptional Needs Today, I have the honor of working with passionate, motivated people every single day. These remarkable individuals comprised of parents, selfadvocates, educators, doctors, and therapists act as catalysts for change. They are the voice of tomorrow. I want to introduce you to Pam Mines, a passionate champion for families with differently-abled loved ones. Pam, the mother of a young man with autism, introduced JP’s Law in Virginia and the District of Columbia years ago to ensure individuals with different abilities are recognized and supported in their communities. The law allows individuals to voluntarily add an innocuous code to their driver’s license or identification card noting autism or an intellectual disability to keep them safe. In her exclusive piece, JP is…Just Fine!, Pam shares how her son’s autism diagnosis affected their family, including how it fueled her work as an advocate and uplifting voice of support. Another remarkable person joins us to explore a subject matter too many people tend to shy away from—mental health. Successful novelist and mental health advocate J. Edwards Holt, diagnosed with Tourette’s syndrome, anxiety, depression, obsessive-compulsive disorder (OCD), and attention-deficit/hyperactivity disorder (ADHD), has provided us with an excellent article called Top Ways You Can Identify and Manage Obsessive-Compulsive Disorder. His informative piece can help you understand an OCD diagnosis and perhaps guide you in finding new ways to manage it. His approach is both relaxed and supportive. Disclosing some of your darkest times in an effort to educate and support others can be a most generous gift. Tasnuva Sarwar Tunna, PhD, a neurodivergent autism parent, has courageously shared her journey to becoming a survivor in her piece, Being an Exceptional Parent: Nine Ways to Nurture Your Own Special Needs. Tasnuva’s honest and warm-hearted advice will soothe and empower the soul. As she asserts in her piece, “Persevere such that your weakness becomes your strength, and your strength becomes your superpower!” One of the greatest blessings in life is the role of a parent. It can also be the most challenging—especially when someone you love needs extra care and support. Using her experience as the mother of a non-verbal young man with autism and as an autism coach, Deanna Picon has creatively composed the kind of personal letter every exceptional needs parent would appreciate receiving this Mother’s Day or Father’s Day. As Deanna so eloquently states in her piece, Celebrating Parenthood: From One Special Needs Parent to Another, parents who
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stay and accept the challenges of raising a child with a disability deserve a medal for courage. “Even though we didn’t know what was ahead, Dads and Moms like us took a deep breath and walked on. And because of our courage and determination, our children will have a better life,” Deanna writes. We also treasure the loving words of Melissa Dean, a devoted homeschool mom to eight children ranging in age from seven to twenty-five. Melissa’s youngest four children have exceptional needs. In her piece, Seeing and Loving Lydia, Melissa has graciously given us a glimpse of her loving journey with Lydia, her delightful daughter with Down syndrome. Melissa’s voice is warm and inspirational. This issue is overflowing with valuable guidance, including an excellent article on how a meltdown differs from a tantrum, how to identify possible triggers, and the importance of allowing the use of individualized stims and other coping methods when overwhelmed. We also have articles focused on why a child may engage in self-injury, ways to improve social skills, and why it’s crucial to strengthen executive functioning skills. We provide guidance centered on what to do when a special needs diagnosis is received, facts you need to know about government benefits, and what happens when student services end. There are also several articles centered on the value of authentic friendships when there are different abilities and the importance of parental relationships inside and outside the exceptional needs community. Plus, so much more! We have been delighted with the tremendous response to Exceptional Needs Today. We want to extend a special thank you to our incredible subscribers, contributors, and advertisers. 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
EXCEPTIONAL ADVOCATE
JP is… Just Fine! By Pam Mines
M
y son JP has autism and he is changing the world, but he has no idea. He has a law named after him in Virginia and the District of Columbia called “JP’s Law,” and he has a foundation named after him called the JP JumPers Foundation. He is the face of them both. JP has autism, attention-deficit/hyperactivity disorder (ADHD), and intellectual disabilities, and he is the inspiration behind my advocacy. JP’s diagnoses are not all of who he is; they are only a part of him. He is kind, funny, and empathetic. He is a video gamer, a student, and a friend. He likes music, singing, and posing for pictures. He is our joy, our inspiration, and truly our gift. You see, we believe having a loved one with special needs is not
an accident, a punishment, or a curse; it is truly a gift from God, and we take this appointment seriously. I have a background in early childhood education and grew up with two childhood friends who have autism (when the ratio was one to 10,000). I was familiar with autism; it was easy for me to accept JP’s diagnosis and jump into advocating for him. But things were not that easy for my husband, Perry. Like many families who first learn of an autism diagnosis, he was in denial. This kind of denial seems to be particularly prevalent in the black community. We do not want labels on our children or loved ones because, you see, “My mom’s little cousin’s sister on her Daddy’s side acted just like that and he turned out just
Exceptional Needs Today | Issue 3 | 7
EXCEPTIONAL ADVOCATE
I decided I did not need to wait for tragedy to happen to initiate positive change. I needed to be proactive instead of reactive; I wanted you to know who JP is, not who he was because he was shot and killed due to a lack of understanding about his diagnosis and the behaviors related to it. fine,” or you hear, “We gonna pray for that child and believe me, he will be just fine.” You’re also told, “Don’t worry about it…he’ll grow out of it and be just fine.” The reason for this denial is because being black already makes you a minority, and when you have a special needs diagnosis, you are now a minority within a minority. In the black community, that is SCARY! Once I realized my husband’s struggles, I didn’t dismiss them; I embraced them. I knew there would be many emotions he would go through when learning this diagnosis (as did I). The feelings of anger, embarrassment, guilt, and sadness had to be felt and expressed to ultimately reach the reality of acceptance. I knew he had to mourn the son he didn’t have and accept the one he did. One day I left a short, one-paragraph explanation of what autism was on his pillow. After reading it, this sports-loving Dad understood his son might not be in Little League, but he could be in the Miracle League. It may not be the Olympics, but it would be the Special Olympics. He understood our son could do anything he wanted…it just may be a modified version to meet his needs and abilities. Now our son is an athlete (and a great teammate) competing in softball, basketball, ice skating, roller skating, and track/field.
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Watching our son do the same things his typically developed peers could do gave us concern he may also have the same outcome as other black males when innocently interacting with law enforcement. We knew he would not be able to effectively communicate when approached; would his encounter end tragically like so many before him, or would he walk away unharmed? He is a black male with autism who, at a glance, presents as a typically developed teenager—not an atypical one. I decided I did not need to wait for tragedy to happen to initiate positive change. I needed to be proactive instead of reactive; I wanted you to know who JP is, not who he was because he was shot and killed due to a lack of understanding about his diagnosis and the behaviors related to it. In 2014, I initiated “JP’s Law” in Virginia. “JP’s Law” allows individuals to voluntarily add an innocuous code to their Virginia-issued driver’s license and/or identification card, noting they have autism or an intellectual disability. This initiative was a collaborative effort. The Virginia Department of Motor Vehicles, State Police, Local Police, Self-Advocates, Community Leaders, and Legislators came together to create the law as well as the code, ensuring it was something easy for law enforcement to remember, learn, and understand. In April of 2019, the District of Columbia (our nation’s capital) adopted JP’s Law as
EXCEPTIONAL ADVOCATE
well. Now more than 2,000 individuals have this specialized ID across VA and DC. JP’s limited cognitive ability does not allow him to understand the impact of this law. He can’t explain it, he can’t converse about it, and he can’t answer questions related to it. He only knows it is named after him and that he gets to take pictures and do interviews on TV with Mom, where he talks about being in Special Olympics. And he is fine with all of that. The beauty of “JP’s Law” is that it will impact those with high and limited cognitive ability, those who drive and those who don’t, children and adults. The goal is to make “JP’s Law” a national law, as we are sure it will save lives. In 2017, then-Senator Kamala Harris talked with Holly Robinson-Peete about creating a law for individuals with autism that allowed them to add a code on their driver’s license or identification card, noting they had this diagnosis. Harris agreed with the need for this change and that it would save lives. Knowing that three years earlier, I had already done this unanimously through the Virginia General Assembly confirmed the reality and importance of making “JP’s Law” a national law for all. Via our new President Joe Biden’s Disability Coalition, there is a renewed interest and commitment to amending our laws, policies, and culture to ensure full inclusion for those with disabilities in the United States in all parts of our society. Making “JP’s Law” a national law will do just that. JP is 16 years old and in the 10th grade. He was diagnosed with a developmental delay at 14 months, autism at two years old, ADHD at 10 years old, and an intellectual disability at 16 years old. He didn’t talk until he was three years old. He was not fully potty trained until he was almost seven years old. He still can’t tie a knot (or his shoes). He reads and spells well; he likes art, is a good friend, and is a wonderful person. He is the face of “JP’s Law” and the JP JumPers Foundation charity, and he’s taller than his Dad. He is a high schooler, enjoys being an athlete, and he loves to smile. In all of what he can and cannot do, he is our JP, and he is…just fine! Pam Mines is a wife, mother, author, entrepreneur, special needs advocate, lawmaker, and low-key comedian. This Virginia native is a passionate champion for families with differently-abled loved ones and the community as a whole. Her passion is largely because her son JP has autism and she wanted him and others like him to feel supported and seen. Her out loud, out front, and out of control advocacy has raised awareness across the country for this unseen community. She is an out of the box thinker who gets things done with her jovial approach and positive outlook about a very serious subject. She reminds us that having a loved one with special needs is something you’re chosen for, which led to her first children’s book titled God Chose Me. Pam prides herself on being a contributing voice for the special needs community, but not the only voice. Website: www.PamMines.com Facebook: https://www.facebook.com/PamMMines Instagram: @PamMMines Twitter: https://twitter.com/PamMMines YouTube: https://www.youtube.com/c/PamMMines
Exceptional Needs Today | Issue 3 | 9
PARENTAL SUPPORT
Celebrating Parenthood:
From One Special Needs Parent to Another By Deanna Picon Hey Jen, How’s it going? Sorry I haven’t called or texted you lately. It’s been really stressful and crazy trying to work on the PowerPoint presentation for my boss while helping the kids with their virtual learning and the thousand other things on my plate. Sound familiar? I can’t believe it’s already May. Boy, this year is going by so fast! I haven’t had a chance to get you anything for Mother’s Day yet. And Father’s Day is right around the corner. Are you still buying the barbeque grill for Steve’s present? I think he’ll love it. I’m still not sure what I’m getting for Tony. I went to the store today to buy some Mother’s Day cards for my mom, aunt, and sister, but I couldn’t find the right one for you. No worries. I did buy you a Lotto card. And if you hit, remember our pact: we split the cash 50/50, buy two oceanfront mansions in the Caribbean, and retire. Sounds like a winning plan to me! I have to tell you something. An unusual thing happened while I was browsing and reading some cards. I started thinking about what it really means to be a parent and a special needs parent at that. I really couldn’t decide if I should buy you a serious or funny card because of all the ups and downs we’ve been going through. Honestly, I think the last year and a half have been one of the most difficult periods of our journey. It wasn’t easy raising a child with a disability even before the coronavirus pandemic. Between school activities, IEP meetings, doctors’ and therapists’ appointments, and just taking care of our families (and a million other things!), it was a miracle if we knew our own names. And now, sometimes it feels like a miracle if we can keep our kids focused on the computer for just 15 minutes of their remote school day while making meals and checking voicemails, texts, and emails. Did I mention we still need clean clothes to wear?
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PARENTAL SUPPORT
We’re living through some uncertain times, and so are our kids. The COVID-19 pandemic changed not only our lives but also the routines, schedules, and structures we all depend on. Who knew? We need those routines just as much as our children do. All this stuff has given me more insight as well as some different perspectives about parenting. First of all, parenting is a hard job, period. But for us, it’s definitely harder than for the average parent. We’ve always had to deal with a ton of things parents of typically developing children don’t have to. Then, the COVID-19 pandemic came along and added even more overwhelming stress, anxiety, and demands to our lives. It seemed like overnight, Brianna and other young kids lost access to school and academic programs as well as physical, occupational, speech, and behavioral therapies. Adults with disabilities weren’t able to attend day habilitation or vocational and recreational programs. By the way, how did the Zoom session go with Brianna’s therapist? It’s like special needs parents were suddenly told we had to become home-based Special Ed teachers and therapists
without proper education or real training, like we didn’t have enough on our plates beforehand! Thank goodness for the countless number of YouTube videos and resource materials posted by teachers, therapists, schools, autism organizations, and special needs publications from all over the country. They have been such a tremendous help to both of us. We stepped up to the best of our ability, and we’re still hanging in there. Even with our fears, anxieties, and concerns, we provide a safe haven for our children. I’ll be the first to admit it definitely isn’t easy. But they’re our kids, and we love them. So, we make sacrifices and do what we have to do. As the country celebrates Mother’s Day and Father’s Day this year, special needs parents like you and me should be patting themselves on the back for being the dedicated and caring parents we are. And I don’t mean in a self-serving or arrogant way. All those who stay and accept the challenges of raising a child with a disability deserve a medal for courage. We faced up to our responsibilities, even though it meant braving uncharted territory. Even though we didn’t know what was ahead, Dads and Moms like us took a deep breath and walked on. And because of our courage and determination, our children will have a better life.
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PARENTAL SUPPORT
There’s a word to describe people who live up and face up to challenges; we call them heroes. Even if the world doesn’t recognize it, you will always be a hero to Brianna and to those of us who have walked in your shoes. Now, I’m not saying we’re superhuman. Unless you have a secret identity, superpowers and a cape hidden in your closet I don’t know about, neither of us is a superhero. And no parent of a child with a disability is going to make it without help, whether it comes from other people or from within ourselves. I guess you can tell all of this has got me thinking. I’ve realized there are a few things I know for sure about parenting. I’m writing them down here so when things get overwhelming, either of us can look back at this letter and remember these words of wisdom. Okay, okay…stop laughing. I can see your smiley face now and hear your crazy, loud laugh. I know they’re rare, but I do have occasional moments of brilliance, if I may say so myself. So, here’s what I’ve come up with…
1
NOBODY IS PERFECT Kicking yourself for not being a perfect parent is easy—it’s also not productive or fair. Perfect parents do not exist—only real human beings doing their best. You’re allowed to make mistakes, get frustrated, angry, or even become a little sad at times. Please, cut yourself some slack every once in a while.
2
a quick nap. Meditate. Write in a journal. Read a magazine or stream some films on Netflix. Tony grabs a beer and watches his favorite sports teams on TV. I spoke with Julie, and she loves doing her home facials. Next time I go to the pharmacy, I’ll pick up some face masks for us to try.
3
REWARD YOURSELF Acknowledge you are an amazing parent. Day in and day out, you’re caring for your special needs child. It’s because of you that your child’s needs are being met with consideration and love. Because of all you do every day, make sure to do something nice for yourself at least once per week, no matter how small. Buy yourself a lovely gift. Have fun shopping online. It comes down to having a healthy respect for your own needs and the circumstances you’re handling. Parents have shown great resilience and determination during this pandemic. Give yourself the credit and rewards you deserve.
4
BE HEALTHY I have an idea. We’ve been talking about getting fit and losing all the pandemic pounds we gained over the winter. It’s finally nice and warm, and definitely time to get out of the house. Let’s go to the park and walk for 30 minutes two or three times a week and catch up. The fresh air will help clear our minds. It’ll be fun and healthy at the same time. Steve and Tony can watch the kids.
FOCUS ON YOURSELF WHEN YOU CAN I’m not saying to become selfish—I’m just saying that it’s okay to focus on you—the person beneath the “special needs parent” label we all wear. It’s not wrong to think about our own needs every so often, and we shouldn’t feel guilty for doing so.
Hey, that’s it. I just figured out what to get you for Mother’s Day. A pair of walking shoes or running sneakers. That way, you’ll have no excuse for backing out of exercising with me!
With everything that’s going on in the world these days, “selfcare” is essential. It’ll make you feel better and help the entire family. It can be as easy as going to your bedroom or another room and simply closing the door, tuning everyone out. Take
And before I forget, Happy Mother’s Day and Father’s Day to all!
So, what do you think? Call me when you get this, so we can talk about the shoes or sneakers you’d like.
Deanna
Deanna Picon is the founder of Your Autism Coach, LLC, which provides comprehensive support programs and seminars for parents of special needs children. Her personal mission is to empower parents as they advocate for their children while balancing productive work and family lives. As the parent of a non-verbal young man with autism, Deanna Picon personally understands the impact of autism on a family. She knows first-hand how heartbreaking a diagnosis of autism can be for parents and the personal struggles that often follow. But, through her own journey with autism, Deanna also recognizes the special joys, rewarding experiences, and unique life gifts which can result from raising a child with special needs. Deanna’s articles have appeared in Autism Parenting Magazine, Exceptional Parent Magazine, and Parenting Special Needs Magazine. She is the recipient of both the 2018 “Top Parental Advice Writer Award” and 2015 “Top Life Coach Writer Award” from Autism Parenting Magazine. Her academic credits include a Bachelor of Arts degree in Psychology and a Bachelor of Arts degree in Broadcast Journalism from Syracuse University. Website: www.yourautismcoach.com Email: info@yourautismcoach.com Book: www.amazon.com/dp/1497581222
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PARENTAL SUPPORT
The Value of Parental Friendships Inside and Outside the Exceptional Needs Community
By Amy Nielsen “FRIENDSHIP IS THE COMFORT OF KNOWING THAT EVEN WHEN YOU FEEL ALONE, YOU AREN’T.” —AUTHOR UNKNOWN
R
aising a child with a developmental disability, such as attention deficit hyperactivity disorder (ADHD) or autism spectrum disorder (ASD), can be challenging. Parents and caregivers often feel overwhelmed and under-supported. They need all the help they can get. I know this because I am one of them. My youngest son is five years old. He has ADHD and ASD. His older siblings were in their teens and twenties by the time he was born. Even though parenting a special needs child was new to me, I was confident I could handle it on my own. I thought my 20 plus years of experience as a parent and educator prepared me for the task. I was wrong.
Having a solid support system is crucial for any caregiver. Still, it is difficult for families of children with special needs to maintain a support system and even harder to build one. These families often have less time due to the demands of special needs parenting. They may also have less access to respite services or babysitters. It can also be challenging to take children with autism to some locations, minimizing social ability. But having friends and social interaction still can and should be a priority. It is important to make and maintain friendships both inside and outside the special needs community.
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PARENTAL SUPPORT
Friends inside the special needs community In the early days of my son’s diagnosis of ADHD and autism, one of the struggles I faced was a feeling of isolation. I did not know anyone who had gone through what I was experiencing. I was scared. I had nothing but unanswered questions. What was the future going to look like for my child? What would the impact of his diagnosis be on our family? How could I handle the challenges he faced with confidence? I didn’t know what was normal anymore. I didn’t feel I could relate to other parents of children my son’s age. Eventually, I realized I needed to connect with other parents experiencing the same things, both to learn from, and to lean on. At first, I joined online special needs communities and support groups. Through these groups, I began to see that my life as a special needs parent was normal; it was just a new normal. I saw parents expressing the same doubts as me but also an unwavering acceptance. I learned I can be confused and scared and STILL accept and embrace my son’s autism. Finally, I felt I could exhale. I then made friends with a few parents of children who attended therapy with my son. The first time I went to breakfast
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with one of these parents, we couldn’t stop talking. We each appreciated being with someone who understood our unique parenting challenges. When I spend time with parents within the special needs community, we can safely share our daily lives’ realities. Yet, I still always leave feeling uplifted, optimistic, and hopeful. Even when we can’t meet in person, we keep in touch and encourage each other via texting or email, and currently, due to COVID, lots of Zoom calls. These friends have become the pillars of my support system as much I have to them. Navigating the special needs world is overwhelming. We must make constant decisions about our children, such as medical care, education, and therapy, which could leave us feeling uncertain, doubting if we made the best decisions. I am grateful I now have friends who understand this. When I must make a new decision regarding my child, they are the first people I turn to for advice. Like it did for me, feeling connected to another person through a similar struggle can help you overcome feelings of isolation. It can help you find a new normal when you realize you aren’t the only family in your situation. But you have to take the initiative to find those people.
PARENTAL SUPPORT
Tips for making friends within the special needs community 1. Join online support groups via social media 2. Introduce yourself to parents of children at your child’s therapy center or school 3. Make friends with parents of children your child’s age so you can share similar experiences and your child can have playmates their same age 4. Make friends with parents of children a little older than your child, so you have a mentor from someone who has been where you are 5. Make friends with parents of children who are younger than your child, so you can mentor someone who is where you used to be
Friends outside the special needs community
over 300 families of children affected by various special needs and abilities. At its core is the question, “To what extent do we accept our children as they are, and to what extent do we help them become their best selves?” This book came into my life at one of my lowest points. I genuinely believe this book, along with therapy, helped save me from depression. It helped me realize the answer to the above question is both. I will accept my child for who he is while simultaneously helping him become his best self. I am thankful for those friends. They acknowledged that even though they didn’t understand what I was going through, they still wanted to be a part of my support system. My life shouldn’t always be about my son’s needs. Sometimes I need to focus on myself, and you need to focus on you. We will always place our children’s needs as a high priority, but their needs shouldn’t be above our own. And having great friends is one of the best things you can do for yourself!
As important as it is to have friends within the special needs community, you also need other friends. You need a break from being immersed in that space. You need friends you feel a connection with not because of a similar situation but because you genuinely care for one another.
Tips for maintaining friendships outside the special needs community
When my son was first diagnosed with ASD, I briefly ended friendships with friends whose children didn’t have autism. It was too difficult for me to hear the things their children were doing that my son could not. I knew this was not emotionally healthy, so I went to counseling. As difficult as that time was, I am grateful I experienced that phase. It not only opened my eyes up to the power of therapy but also to why I needed those friends in my life.
2. Educate your friends about your child’s disability but try not to let that be the focus of every conversation
Those friends reached out during that time and supported me in ways that left me speechless and amazed. Even though they were disappointed that I backed away from our friendship, they sent emails and texts. They told me they wouldn’t push me but would be there for me when I was ready.
4. If getting together in person is not an option due to COVID or lack of childcare, set up a time to have a monthly Zoom meetup either after your child is asleep or while in school. It is the time with your friends that matters, not the format of that time
One of those friends sent me a book by Andrew Solomon called Far from the Tree: Parents, Children, and the Search for Identity. Voted by The New York Times as one of the ten best books of 2012, Far from the Tree is an intimate examination of
When you systemically work to build friendships both inside and outside the special needs community, you create a support system that will help you, your child, and your entire family thrive. Friends aren’t a luxury; they are a necessity!
1. Reach out to friends you haven’t spoken to in a while and make plans to get together
3. Do things with your friends outside the special needs community that fill your self-care needs, such as a kid-free lunch, a visit to the salon, or watching a movie. Even if you can only do an outing once a month, it will be something you look forward to and help continue to deepen those friendships
Amy Nielsen is the creator and owner of the Big Abilities blog and podcast, which is her personal platform for providing resources and support to the exceptional needs community. Additionally, she serves as an Early Intervention Specialist and Parent Advocate for Collaborative Corner for Exceptional Children. Amy is also a freelance writer for Playground Magazine and a contributing writer at The Mighty and Autisable. She is the author of the book, It Takes a Village: Get Your Hands Dirty and Build Yours From the Ground Up, a step-by-step guide to helping families of exceptional children build the support system they so desperately need. Amy began her journey of helping families of exceptional children after her own son was diagnosed with autism spectrum disorder. Website: www.bigabilities.com
Exceptional Needs Today | Issue 3 | 15
MY WORD
Seeing and Loving Lydia By Melissa Dean
M
y daughter Lydia loves elephants. An elephant calendar hangs above her bed, which is adorned with an elephant bedspread. Twenty-one elephant figurines of varying sizes and materials line the shelves in her room. She tries to wear her elephant shorts even on winter days and has enough elephant shirts for every weekday, no matter the season. I think she has watched every elephant documentary on Amazon Prime at least five times and has pretty much memorized Dumbo. We have read countless elephant books—some fiction and many nonfiction ones. Lydia doesn’t just love elephants; she knows a LOT about them. Thanks to Lydia, I, too, have learned a lot about elephants— and a whole lot of other things, most especially the individuality and limitless possibility in every child. One of the first things Lydia taught me was how ignorant I was. She was born with Trisomy 21, better known as Down syndrome, a condition I mistakenly referred to as “Down’s Syndrome” in my first entry on the Caring Bridge website I created after she was born (I cringe now thinking of that). My only prior experience with Down syndrome was playing with a neighborhood boy while I was in elementary school. I knew Austin was different than other kids in some significant ways, but that was the extent of my experience.
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The first hint Lydia had Down syndrome came through my triple screen, a prenatal test I had taken multiple times before, always marked by a period of nervousness preceding the reassuring call that all was well. This time, instead of a reassuring call, I was gifted an appointment with a genetic counselor, who encouraged me to get an amniocentesis so I would know for certain whether my baby had Trisomy 21 in case I “wanted to terminate the pregnancy.” As a Christian who believes in the sanctity of life—all life— the thought of terminating the pregnancy appalled me. As a woman who had just experienced four miscarriages in a span of 18 months, the thought of an amnio terrified me. So, I firmly refused the amnio, spent about a week in shock, wrestled with the Lord until I got peace that He had created my baby with His own hands and that any “imperfections” He allowed did not change that, and proceeded on with the rest of my nine months of pregnancy. Female elephants are pregnant for 22 months and give birth to babies that can weigh well over 200 pounds. One of the most fascinating things I have learned about elephants is that they travel in groups of adult females and children led by matriarchs, typically the oldest female in the herd. The elephants are deeply connected to one another and are very protective.
MY WORD
The night after Lydia’s birth, when the adrenaline of delivery had abated and the flurry of family and medical providers had left for the night, I sat in my hospital bed learning to nurse this new life and was overwhelmed by an intense desire to protect her. The image that kept coming to me was that of a broken-winged bird that needed to heal in order to fly, but that could easily be snatched by predators if I did not keep it safe. In that moment, I grieved the brokenness, but the protective instinct far surpassed the grief. When Lydia and I woke the next morning, I felt an unbreakable bond with her and knew instinctively my life would never be the same. It hasn’t, and for that, I am grateful. Children with Down syndrome are vastly different from one another. The extra copy of the 21st chromosome that inhabits every cell in their body manifests itself in a myriad of ways. Most children with Down syndrome have a slightly altered facial appearance, are shorter in stature, and have low muscle tone. Many have heart defects, GI conditions, or thyroid problems; some have all three. Most are developmentally delayed in areas like walking, talking, or feeding. Some remain nonverbal or non-ambulatory for their entire lives. There are as many combinations of the manifestations of Trisomy 21 as there are children who have it. Individuals with Down syndrome are often stereotyped as being “happy all the time” or “extremely stubborn.” Such views are like any other attempt to categorize individuals—inaccurate and greatly restrictive. While physical characteristics are visible and easily noticed, people who stop there and fill in the blanks with assumptions miss out on discovering who the person really is, much like stereotyping that often occurs with race or gender. Sure, Down syndrome is one part of who Lydia is, but there is so much more. One day last year in our homeschool co-op, a classmate handed Lydia a beautiful silk pouch with an elephant on it. Inside was a bracelet with light blue stones surrounding an elephant charm and a keychain with a little blue elephant hanging from a circle inscribed with “Hope, Trust, Love, Dream.” Lydia’s face lit up with joy at the unexpected gift. The little boy’s mother
later told me he had noticed it in a store and commented, “Lydia would like that. She loves elephants!” So, his mother bought it for him to give to her. I cried that day—sobbed actually. And if I let myself, I will need to stop typing this to sob again. The tears are a mixture of gratitude and sorrow. I will never forget the way that little boy truly saw Lydia, thought of her outside of school and gave her such a thoughtful gift for no reason other than to bring her joy. That memory fills my heart with gratitude mixed with sorrow because it is such a rare occurrence. I have come to realize that the greatest risk facing Lydia is not her heart condition, her intellectual disability, or physical limitations caused by that extra copy of the 21st chromosome that dwells in her cells, but the likelihood of being unseen by those around her. Like a matriarchal elephant, I will guide Lydia through life the best I can. I will ensure her physical needs are met, that she receives the best therapies and medical care, and that I educate her in ways that maximize her potential. As much as I am able, I will surround her with people who have eyes to truly see her and a heart to love her. Nothing will sever my bond to her. And like all of the adult female elephants in a herd, I will protect her from any perceived threat. This year, Lydia will turn 13 years old. She loves to read and sing. She has very blatant crushes on boys and vocalizes her intention to marry them. She loves to ride her bike and go on hikes. She has lightsaber duels and Nerf gun wars with her brother and helps care for her little sister. She works hard on her schoolwork so she can go to college one day and wants to work at Chick-fil-A when she turns 15, just like her older brother and sister. She adores her family, friends, and the many adults who help strengthen her weaknesses and nurture her passions. Lydia can often be found in the evenings sitting on the blue chair in our family room watching her one television show of the day—most often another documentary on one of the strongest, wisest, most compassionate, and most loyal creatures on the earth. A majestic and inspiring creature with whom Lydia shares much in common, including the fierce protection of a mother who loves her.
Melissa Dean is a homeschool mom to eight children who range from ages seven to twenty-five. Her youngest four children have exceptional needs. She is a high school English teacher at Pennsylvania Homeschoolers and a doctoral candidate in special education. She is passionate about helping children with special needs maximize their potential. She lives in Chesapeake, VA with five of her children, two dogs, a bearded dragon, and a beta fish. She loves books, plants, complicated coffee drinks, enjoys playing strategy games, and blogs occasionally at crosseyedliving.wordpress.com
Exceptional Needs Today | Issue 3 | 17
EXCEPTIONAL ADVOCATE
Autism Society of America
Launches Campaign to Weave Autism Acceptance into Our Social Fabric
By Amy KD Tobik
THE AUTISM SOCIETY OF AMERICA, THE NATION’S OLDEST LEADING GRASSROOTS AUTISM ORGANIZATION, IS CONDUCTING A COLLABORATIVE VENTURE WITH NATIONAL AUTISM AND DISABILITY ORGANIZATIONS TO ADVOCATE FOR APRIL TO BE OFFICIALLY DESIGNATED AS AUTISM ACCEPTANCE MONTH. CHRISTOPHER BANKS, PRESIDENT AND CEO OF THE AUTISM SOCIETY OF AMERICA, BELIEVES THE SHIFT FROM THE COMMONLY USED SLOGAN, AUTISM AWARENESS MONTH, TO ‘AUTISM ACCEPTANCE MONTH’ WILL CREATE ADDITIONAL OPPORTUNITIES FOR INCLUSION AND SUPPORT FOR ALL MEMBERS OF THE AUTISM COMMUNITY.
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EXCEPTIONAL ADVOCATE
L
earn more about this meaningful shift in terminology and what it means for the future of autistic individuals and their families in an exclusive interview with Christopher.
The Autism Society of America first launched advocacy campaigns back in the 1970s when few people knew about autism spectrum disorder (ASD). How has terminology shifted over the years, and how has this evolution helped to empower autistic individuals and their families? In 1972, the Autism Society of America founded “National Autistic Children’s Week,” which has since evolved into a global grassroots movement for April to celebrate Autism Awareness Month. This movement provided an opportunity for education and research into autism spectrum disorder at a time when the general public did not know much about autism. Through decades of advocacy, awareness has become more widespread to encourage earlier diagnosis, better diagnostic practices, and more funding dedicated to supports and services throughout an individual’s life. Autism Awareness Month allowed autistic individuals and their families to be seen, heard, and recognized through a greater community of connections. Throughout our 56-year history, we have prided ourselves on being a leader, and our efforts this year include advocating for a federally recognized designation for April to become Autism Acceptance Month. Over the past few decades, many advocacy groups have incorporated the term acceptance into their language to more fully integrate the millions of people diagnosed with autism, including the Autistic Self Advocacy Network (ASAN). What inspired the Autism Society of America to formally shift their language from “Autism Awareness Month” to “Autism Acceptance Month” in 2021? April has widely been known as Autism Awareness Month in the United States as a way to empower autistic individuals and their families. This year the Autism Society of America, alongside the greater autism community, is formally shifting references of Autism Awareness Month to Autism Acceptance Month. Words matter. As we work to create a more accepting society, we must also accept autistic individuals for who they are. Acceptance is often one of the biggest barriers to being valued and finding and developing a strong support system. While many organizations and advocates have long-used the terminology surrounding acceptance, there has never been a formal designation for the month. The Autism Society of America and its 75 affiliates are advocating for Autism Acceptance Month to be formally designated at the local, state, and federal levels. Alongside other national disability organizations and community advocates, this message is being carried out by thousands of individuals through unified messaging to media, lawmakers, and the general public.
Awareness is education. It’s knowing that an individual has autism. Acceptance is finding pathways for inclusion and support, ensuring that the individual you are aware of is fully incorporated into the social fabric. Why do you believe this shift in language is vital for the autism community? What changes do you hope this change will ignite? Fostering acceptance is critically important to improving opportunities in education, employment, accessible housing, affordable health care, and comprehensive long-term services and supports. It is not enough to be aware of autism, our society needs to accept the autism community and take actionable steps to better support individuals to live quality, meaningful and supported lives. Acceptance puts pressure on our leaders to dedicate more funding in support services for the autistic community.
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EXCEPTIONAL ADVOCATE
Since the beginning of the pandemic, the autism community has been disproportionately impacted. As solutions to address COVID-19 are implemented, acceptance and inclusion of autistic individuals will be critical to the community’s health and well-being. Now is the time to highlight the need for acceptance so that those affected with autism can access services and support for safe and healthy living.
ebrateDifferences campaign in April with two exciting events on Facebook Live. On April 1st, a panel discussion about Autism Acceptance Month will feature autistic self-advocates Anthony Ianni, Chloe Rothschild, and Kris Guin; then on April 2nd, Freeform’s cast of ‘Everything’s Gonna Be Okay’ will lead a discussion on what it means to accept people no matter their differences.
Early diagnosis is the key to ensure an autistic child gets the essential support and services needed. A recent study found that the average age of ASD diagnosis can be reduced by two years with standardized screenings in pediatric check-ins at 18 and 24 months. Acceptance leads to healthcare equity and widespread adoption for healthcare providers to access the tools needed for accurate early diagnosis.
#CelebrateDifferences aims to champion those affected by autism to live full, quality lives through connection and acceptance. This coincides with the Autism Society’s collaborative effort to advocate for a formal federal designation to make April Autism Acceptance Month.
Too often, assumptions are made about people on the autism spectrum by people who don’t understand the diagnosis. Do you think an official designation of Autism Acceptance Month will help reduce misconceptions? While we will always work to educate others about autism, words matter—the need for acceptance is greater than ever, as we strive for autistic individuals to live fully in all areas of life. We believe inclusion begins with acceptance, and by being integrated into our social fabric, misconceptions and stereotypes will have a greater chance of being disproven.
As the nation’s oldest leading grassroots autism organization, Autism Society of America works to improve the lives of all affected by autism. Annually, the organization and its 75 local affiliates serve over half a million individuals impacted by autism through education, advocacy, information and referral services, support, and providing community inclusion and acceptance at the national, state, and local levels. For Autism Acceptance Month in 2021, the Autism Society of America has set a fundraising goal of $200,000 to grow its impact and serve even more people.
In addition to our advocacy surrounding acceptance, people can visit AutismAcceptance.org to download resources about signs, symptoms, and facts surrounding autism to further combat misconceptions. How do you think the revised terminology will positively affect autistic individuals and their families for the future? Awareness is education. It’s knowing that an individual has autism. Acceptance is finding pathways for inclusion and support, ensuring that the individual you are aware of is fully incorporated into the social fabric. Acceptance doesn’t mean that we are complacent. It means we recognize the need to fully accept autistic individuals into our lives to be supported as meaningful members of society. We are dedicated to providing accommodations, committing resources and support, and to considering the autistic community with any decisions that affect the public. April Events for Autism Acceptance Month The Autism Society of America is kicking-off its annual #Cel-
ABOUT AUTISM SOCIETY OF AMERICA
Website: AutismAcceptance.org Instagram: https://www.instagram.com/autismsociety/?hl=en Twitter: https://twitter.com/AutismSociety Christopher Banks has a comprehensive background in human services and the healthcare arena, where he has had a successful record of increasing fundraising efforts, measurably improving revenue strategies, and being a transformational leader committed to diversity and cultural growth. Most recently, he served as Vice President of Development and Community Engagement at Charles E. Smith Life Communities in Rockville, Maryland; here, he provided leadership in the development, implementation and evaluation of all philanthropic and community engagement efforts. His daily work supported the organization’s impact strategy and aimed to accelerate growth while building strong community partners. A native of Hazlet, NJ, Chris has spent the better part of the last 25 years in New York Metropolitan area, and has two adult children, Patrick and Quinn. He currently lives in Rockville, MD, and joined the Autism Society of America in January 2020.
Amy KD Tobik is the editor-in-chief of Exceptional Needs Today magazine. She coordinates and directs an impressive group of doctors, therapists, and writers to provide expert guidance and support for special needs families. A graduate of Sweet Briar College in VA, Amy’s experience includes more than 30 years of writing/editing monthly magazines, newspapers, technical documents/manuals, books, and websites. Her special interests include advocating for children, special needs families, and education. She is the CEO of Lone Heron Publishing, LLC
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EXCEPTIONAL EDUCATION
Students on the Spectrum Have Ideas About Inclusion If We Will Listen
By Dr. Stephanie C. Holmes, BCCC IN MY DISSERTATION RESEARCH COMPLETED THIS PAST YEAR, CREATING AN INCLUSIVE CLIMATE FOR STUDENTS ON THE AUTISM SPECTRUM (HOLMES, 2020), SEVEN STUDENTS PARTICIPATED IN QUALITATIVE RESEARCH ON THEIR EXPERIENCE IN THE PUBLIC SCHOOL SYSTEM. THE PURPOSE OF THE STUDY WAS TO EXAMINE BARRIERS TO INCLUSIVE PRACTICES AND HEAR FROM ADMINISTRATORS, TEACHERS, PARAS, SCHOOL COUNSELORS AND PSYCHOLOGISTS, OTHER SPECIALISTS, PARENTS, AND STUDENTS ON THE SPECTRUM. THIS ARTICLE WILL DISCUSS THE STUDENTS’ PERSPECTIVES AS THEIR VOICES ARE NOT OFTEN INCLUDED IN DISCUSSING BEST-PRACTICES OR WHAT THEY WOULD DEFINE AS INCLUSION. IN MY PREVIOUS ARTICLE IN ISSUE 1 OF EXCEPTIONAL NEEDS TODAY, WE HEARD FROM THESE VOICES ON HOW THEY EXPERIENCE SCHOOL. THIS FOLLOW-UP ARTICLE ALSO CONTAINS INFORMATION FROM THEIR INTERVIEWS FROM THAT SAME DISSERTATION RESEARCH.
Exceptional Needs Today | Issue 3 | 21
EXCEPTIONAL EDUCATION
Inclusion definitions from the perspective of the school It is first important to note when I asked administrators and educators to define inclusion, their ideas were slightly different. Defining inclusion included thoughts such as: • Incorporating students into the mainstream as much as possible • Giving the same opportunities to all students • Mainstreaming is huge • I definitely do not think it means inclusion for all students in all settings • Having equal access to curriculum is inclusion • Being with general education peers as much as possible My favorite quote from a county-level role defined it this way, “Creating a culture in that school and in the classroom of everybody is different, everybody is their own, and we need to be kind and then allowing opportunities for the social-fostering of the positive. It [culture of inclusion] comes from the top-down, it absolutely takes the principals and all administrators sharing the message that every student in this building—they are our students. We need to do better about having open hearts and open minds. Every one of our students is valuable and has something to contribute and that we can all learn from each other” (Holmes, 2020).
Inclusion definitions from the perspective of the students These are the responses of students on the spectrum: • Can you not encourage the areas in which we excel? Stop discouraging us where we fail. We are still human. When you pull us out of class for pull out services, you emphasize our differences. • Autism is not one size fits all. We are all humans with different needs and challenges. Approach us as a person/ individual. Don’t punish our disability (behavior). Make a better effort to get to know me as a person and then figure out what may work best for me in school. • I should have equal access to academics and clubs and activities with the supports I need to be successful. We have hopes, dreams, goals, feelings. We are competent despite our outward manifestations. We are not less worthy of appropriate education. Social interactions connect us to the community of human beings, and for us as kids this will be at school.
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• Understanding is key. Teachers need to better understand autism. Many teachers do not fully understand autism and this hurts the students they serve. Our peers do not understand autism; the school could do a better job at this also. • All of us who deal with people on the spectrum every day, know that it’s nothing but a label and labels don’t really matter. I’m as much autistic as I am female, and as much as I am human. It’s just part of who I am. It doesn’t mean I deserve any less respect. Everything you would do with another student we deserve as well. We may need some extra support in doing those activities. Don’t invalidate your students. • There shouldn’t be a stigma. When you’re accepting being someone’s friend, you should accept and try to understand all aspects of a person. People view autism as a source of annoyance, disappointment, or worse in different ways and different degrees. It’s not fair to place judgment upon someone when you don’t even fully know them. There are those who are non-verbal, and we need to learn how to better communicate with them. • Peers need to know that their words have an impact. You never know what kind of damage you are causing on the inside. Teachers need to be more educated about sensory overload and how people on the spectrum process information. I think smaller classes would be helpful so teachers can have time to get that connection with their students and help them learn. When you’re teaching someone, how you treat them not only affects how they learn and how they retain information, it affects their selfworth, it affects how they view themselves, how they feel about their ability to be successful, how they feel about their ability to make friends, to be worthy of friendship, to just be worthy of happiness period. I was told I wasn’t worth much because of my disability [by a teacher]. Ideas from students on how they can be supported Here are the responses from students on the spectrum on ways to help with social interactions: • Social skills groups that only include students with the same issues are pointless. Don’t all students really need to do better with social skills? Why can’t different neuro-typical (NT) peers interact in a fun and engaging time with us in a normal setting instead of a pull-out setting, at lunch or some other time? We can get to know each other in smaller groups and we all can work on how to treat people, share, take turns, and work on perspective taking. Of course, this should be age appropriate and different for elementary to middle school students. Also, social skills groups need to get away from scripted speech and help us social-problem-solve. • We need to have access to before and after school clubs and activities with supports that do not call us out for be-
EXCEPTIONAL EDUCATION
Part of proper inclusion is incorporating a broader view of inclusion beyond one’s interpretation of the law to the experience of the student. ing different. These clubs can be a way to help with social interactions and help connect us to the school community through an activity we like and excel in. • If you do have to pull us out for self-contained classes or resources, can there not be times NT peers can join us, again, to build community, and not make it about a secret or different thing that further alienates us from our peers? • There must be less punitive measures for behaviors associated with autism such as eloping or sensory meltdowns or what teachers feel is disruptive. What are you teaching us through this punishment? How about concentrating on the skill we need or getting us the support we need instead of punishing us and ostracizing us in front of our peers? Change your attitude that we are the problem-child or problem to be fixed; we are people that need understanding and support. • Education about autism and sensory issues to the administrators, teachers, and peers. We do not want pity, we want understanding. We have service days about black history or other civil rights and anti-bullying, but what about teaching about autism and how to include students that are different in various ways? Help erase the stigma. • Students who are non-speaking need access to whatever device or system that works for them to have a voice at school. Depriving assistance in this area is disconnecting and against the law. Not all students who are non-speaking are non-verbal. Presume competence. • Go beyond short-term thinking to long-term. Do not just focus on this year, but what will help build social and in-
dependent skills beyond school. School is not just about performing in school. Is it not about preparing students for life beyond school? • Think of us as a whole child/student—socially, academically, functionally, and behaviorally. • Learn about autistic communication, burnout, and sensory issues and how behavior is communication. • Accommodate us and incorporate our special interest. If the paper must be about different types of things or a how-to paper, why not let us choose an interest? If you assign, “How to make a peanut butter sandwich” but I can write about “How to tack a horse” or “How to achieve the next level in Minecraft,” are these not the same for achieving the core goal? If you promote our interest and tie into the activity, this will help us help you. Also, if we are an expert in something because of our intense focus, ask us to do a project or speech about it and let us excel in front of our peers (note: only if the student is not anxious about public speaking). • Follow the Individualized Education Program (IEP) and do not treat us like a chore because we or our parents are asking for our rights to be met in the public school setting. Part of proper inclusion is incorporating a broader view of inclusion beyond one’s interpretation of the law to the experience of the student. So many students have been through the school system since the original act of 1975 for the inclusion of students with “handicaps,” as it was then called, was implemented. Are we talking to them as adults for better ways to include students of all differences? We can learn from those with the experience if we can overcome the stigma that persons with differences are less than. We need to break out the thoughts of our own biases and perhaps ableism, to listen to the voices of experience for better inclusion and understanding of students on the spectrum to achieve inclusion that matters to them. Holmes, Stephanie, “Creating an Inclusive Climate for Students on the Autism Spectrum” (2020). School of Educational Leadership. 5. https://digitalcommons.acu.edu/school_ed_ leadership/5
Dr. Stephanie C. Holmes, BCCC, is a professional counselor, educator, researcher, author, and certified autism specialist with neurodiversity training. However, her real credential comes from being a mother to an amazing young adult Aspie (AS) daughter. Dr. Holmes’ career focus changed in 2004 when her daughter was diagnosed with Asperger’s (now AS Level One). Her book Confessions of a Christian Counselor was released in 2015 and is available on Amazon. Dr. Holmes is available for consulting, training, and speaking at www.HolmesASR.com. She is the interim host of Converge Autism Radio, where topics of autism from childhood to adulthood are covered.
Exceptional Needs Today | Issue 3 | 23
EMOTIONAL HEALTH
Understanding a Meltdown The Keys to Self-Regulation By Marcia Eckerd, PhD THE KEY TO HELPING A CHILD LEARN TO SELF-REGULATE IS TO UNDERSTAND THE CHILD AS FULLY AS POSSIBLE SO THEIR REACTIONS MAKE SENSE. WHEN WE KNOW THE WHY, WE CAN BETTER COME UP WITH THE HOW OF HELPING. SOMETIMES PARENTS DESCRIBE EMOTIONAL REACTIONS OR MELTDOWNS AS COMING “OUT OF THE BLUE,” BUT IF YOU CAN SEE FROM THE CHILD’S PERSPECTIVE, THERE’S USUALLY A REASON BEHIND REACTIONS, EVEN IF THE TRIGGER ISN’T IN THE MOMENT.
I
would like to consider extreme reactions or meltdowns. Autistic adults describe having a meltdown as a “tornado of feelings.” Having a meltdown feels terrible, and it is a sign of being completely overwhelmed. Sometimes parents think children are being manipulative and having tantrums to get their way. The difference between a tantrum and a meltdown is that a tantrum is a means to an end and stops when the child gets their way. A meltdown is out of the child’s control. Most adult autistics I talk with say the best strategy for handling a meltdown is to keep the child safe and give them space to calm down and avoid trying to ask for an explanation or talking, which can be an instinctive response.
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Meltdowns and emotional reactivity involve both the body and the mind. The amygdala (a part of the brain that processes emotions) perceives a threat and the body goes into a fight or flight response that sends stress hormones through the body, activating the autonomic nervous system (ANS). The ANS impacts almost everything: heart rate, respiration, digestion, and other body functions. A few points are essential to understand about the activation of the ANS or stress response. First, the child might not be aware of why or to what degree they’re reacting; this isn’t always a conscious process. Autistics can be alexithymia,
EMOTIONAL HEALTH
meaning they don’t recognize their own feelings, so sometimes they might not understand their emotional responses. Also, when the ANS is activated, the pre-frontal cortex of the brain—the part that controls thinking—goes offline. Asking a child to explain their reaction while they are reacting will only make the situation worse because being asked to think adds more stress. Criticism isn’t helpful either. To quote an adult autistic on Instagram, “If I had a dollar for every time someone said: ‘You’re so dramatic!’ when I’m suffering from sensory overload, I’d have enough to buy a private island, free of idiotic judgments.” How do we figure out and help the child understand what might be triggers? It can help to do a comprehensive profile of the child. This is not testing by a professional. It is you, together with your child, if they are old enough to contribute, identifying strengths and challenges in every domain. There’s a wonderful website called Autism Level Up! by an occupational therapist and a psychologist with a free PDF download to create a personal profile for a child. Write down sensory issues, cognitive issues (like black and white thinking, difficulty with flexibility and transitions), social issues, and other important factors: executive functions, motor skills, and health issues. Simply having to process too much at once is often a trigger. Experiences during the day, lack of sleep, being hungry or dehydrated, and especially anxiety can put a tolerable level
of stress over the breaking point for some children. As a result, a child’s functioning can vary day to day. Parents might say, “You did that yesterday with no problem,” as if the child is choosing to overreact today. The more issues triggered, the greater anxiety will be and the greater likelihood of reactivity. All of this is to say that reactivity isn’t “out of the blue.” By knowing a child, often one can predict situations or demands that will be triggers and strategize ahead to the best extent possible. Or parents can try to reconstruct what happened, which can be helpful to the child since they may lack the words to explain it. The trick with reactivity is to try to catch it early. Many use the “zones of regulation” approach, where green is okay, yellow is a warning, and red is reacting strongly. The parent and child use this language to check on feelings (“You look like you’re getting into yellow”), so the child (who may be unaware) can check in on body signals of getting upset. Conversely, “I’m getting into yellow” can signal to a parent without a lot of explanation that a child is getting upset and might need a break. There’s a wonderful app called Mood Meter created by the Yale Center for Emotional Intelligence that allows a child to identify their current mood on a graph with green, blue, yellow, and red quadrants, which then give words that help describe that feeling. It also suggests ways to handle the reactivity.
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EMOTIONAL HEALTH
What works to deal with reactivity? Daily meditation is scientifically proven to lower baseline stress and increase resilience, and I recommend it. Meditation can be a valuable part of a child’s bedtime routine or can be a good way for a teen or adult to set a positive tone for the day. However, meditation isn’t appealing to everyone. Meditation is not a crisis response. If a person has a daily meditation practice, doing a brief meditation when one is becoming upset can help de-escalate feelings, but trying to teach someone to meditate when they’re upset is like having a fire drill during a fire—it’s too little, too late. On the Mood Meter app, if a child is in “yellow” (getting upset) and wants to move to “green” (okay), the app will suggest strategies, but you can also add the child’s strategies for coping, such as breathing slowly, recalling a positive memory or place, listening to music, taking a walk, taking some alone time, or using self-talk to calm down (“I’m okay, I can handle this”). The bottom line is being pragmatic—what works for that individual child. There’s no strategy that works for everyone. Many find sensory techniques work best to help with frustration and arousal. The Autism Level Up website has downloadable PDFs of sensory exercises for modulating the amount of energy a child experiences. The authors use a wide variety of sensory and movement strategies to help the child raise or lower their level of arousal to fit the needs of their environment. I worked with one boy who would go out of the room and do wall pushups to calm down and another who used putting his hands in a bucket of sand. Moving, rocking, pacing, swinging, chewing on a chewy necklace or bracelet, sucking on a water bottle, having a weighted vest, or having a fidget or sensory clay can be potentially helpful.
emotions, deal with social interactions, help with concentration, and generally help with self-regulation and processing. The question is whether the child’s stim can be allowed if it’s not self-destructive and works for them; many adult autistics encourage allowing stims.
Most autistic children have “stims” (self-stimulation) that are calming. Stims vary enormously from hardly noticeable actions like wiggling a leg or tapping to spinning and flapping. Often, the goal of interventions is to keep the child from using stims and to substitute with something less evident. A reasonable question is whether it really is necessary to stop an activity that genuinely helps. There may be a way for a child to use their favored stim without being overly distracting, like sitting in the back of the room or going somewhere private. Autistic adults report stims help them formulate language, process
Understanding what factors go into reactivity and knowing the nature of soothing strategies that work for the child (not for us) are the keys to emotional regulation. Helping the child define when arousal is escalating to use these strategies is essential. This may mean recognizing physical signs like getting warm or behaviors like tapping or making a fist rather than experiencing feelings. Accurate self-awareness (for the child) and other awareness (for the adult) and accepting strategies that really work for the child rather than those preferred by the adult are the keys to making self-regulation successful.
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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THERAPIES AND TREATMENTS
What Can We Do
After a Special Needs Diagnosis? By Karen Kaplan I BELIEVE THERE IS NO GREATER REWARD THAN WHEN A FAMILY FINDS THE RIGHT PROVIDER, PRACTITIONER, PROGRAM, METHOD, STRATEGY, PIECE OF EQUIPMENT, ASSESSMENT TOOL, OR OTHER ACTIVITY THAT HELPS THEIR CHILD COME CLOSER TO REACHING THEIR FULL POTENTIAL.
I
have lost count of how many times I have heard parents say their child was just diagnosed with autism, attention deficit hyperactivity disorder (ADHD), Down syndrome, a rare genetic disorder, seizures, or an intellectual disability, then ask, “Now what do I do?”
There are associations and parent networks that have come together to support and educate you on the specific diagnosis you may have just received. • Attention Deficit Disorder Association (add.org)
This is what I advise:
• Autism Society of America (autism-society.org)
1. BECOME THE EXPERT ON THE DIAGNOSIS
• Autism Speaks Tool Kits (autismspeaks.org)
Carve out time to read, connect with other parents whose child has similar challenges, and ask every question you can. No question is silly or stupid.
• National Down Syndrome Association (nads.org) • National Down Syndrome Society (ndss.org)
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THERAPIES AND TREATMENTS
• Seizure Disorders/Epilepsy Foundation (epilepsy.com)
2. PUT TOGETHER AN EARLY INTERVENTION TEAM
• The Association for People with Intellectual and Developmental Disabilities (thearc.org)
The earlier you work with experts in your child’s areas of need, the sooner you will understand how to help them reach their full potential. Communication and eating challenges need to be addressed by knowledgeable speech and language specialists. Motor skills (gross motor, fine motor, and motor planning) need to be addressed by an occupational therapist unless foundational motor needs are identified, in which case, please connect with a physical therapist to understand how to support foundation motor needs. The occupational therapist usually addresses sensory challenges.
• United Cerebral Palsy Association (ucp.org) These larger organizations can identify effective therapies, intervention strategies, and educational curriculums that have worked. In most large cities, there are also parent networks. In Northern California, for example, there is: • Matrix Parent Network (https://www.matrixparents.org) • Parents Helping Parents (php.com) • Support for Families (supportforfamilies.org) First, connect with the larger organizations and ask them for the local parent groups closest to your area.
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• Your early intervention team may need to address seizures. If so, you need to find a knowledgeable neurologist who understands not only seizures but the profile of your child (attention-deficit/hyperactivity disorder (ADHD), autism, cerebral palsy, etc.). • Your early intervention team may need to address visual processing and acuity challenges, so the correct medical practitioner and vision specialist needs to be added
THERAPIES AND TREATMENTS
to your team. This will allow excellent assessments to be completed, with strengths and challenges identified and supports recommended.
Tell them you need their support now more than ever. Make friend time to help you take the break you need in order to be ready to help your child.
• Ensure an audiologist has evaluated your child’s hearing sensitivity and possible loss.
• Learn all about your child’s educational rights. The federal law mandates all students receive a free and appropriate effective education. Learn about the Individualized Education Program (IEP) and all your rights in helping to create that key document that outlines ALL educational services.
• If your child finds sleeping challenging, please find a sleep clinic, psychologist, or neurologist specializing in sleep challenges for those with neurological problems. Excellent sleep lays the foundation for the best learning, and when the child sleeps and the family receives the needed rest they require, the best problem solving occurs. • Some children may gain support from a behavior specialist evaluating a specific behavior challenge not being addressed by a specific therapy. Ensure the behavior company you choose has certified therapists with at least three to five years’ experience helping those with the diagnosis your child has. • There will be those children who may need assistive technology supports. There are specialists who complete these assessments. There are tools to help build communication skills and support educational learning. Ensure the one you choose understands your child’s specific challenges and strengths. • Creating a support team of family and friends is another vital step. Take the time to explain to siblings, grandparents, and other family members about the challenges your child faces. Reduce their fears with knowledge while opening up to help. Perhaps a grandparent might cook some meals for you, or maybe you could find a housekeeper to reduce your stress or have someone come over to provide some supervision while you take a nap or go out for a walk/exercise. Your friends are going to be worried about you. They may find it hard to speak with you. Make the first step forward. Tell them all about your child.
• I have advised families to fire themselves as nannies and butlers and hire themselves back as coaches. If you want your child to maximize their potential, do not think or problem solve for them. Expect them to participate in their own lives. They need to start young to learn how to do everything, as it will take them longer. They can help put their toys away, get a spoon for their cereal, ask for milk to be put on the cereal, get their own coat before going outside, clear their dishes, pick out their clothes, take their hamper to the laundry room, ask for a snack and request a number of chips, and more. Everyone on your teams must be working together to nurture independence. Your educational and therapeutic teams need to be a group of professionals who continue to be open to learning the new technology, curriculums, and therapies that arise. You, as the parent, need to act as the orchestra leader, making sure everyone is on the same page of the music. Appropriate goals and objectives need to be designed, on-going assessment to ensure the correct strategies and interventions are being used needs to be created and implemented, and on-going progress needs to be reported to you. When progress isn’t being made, you need to ask, “Why not?” and decide what is going to be done to address the lack of forward movement. “Life is an adventure now, if nothing else”—Helen Keller
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: Finding Hope for Autism, in 2017. Her third book, Typing to Heaven and Back, is not about autism but about having important conversations with those we love. Be sure to connect with Karen—she is always ready to listen and think of the possibilities. Website: www.karenkaplanasd.com
Exceptional Needs Today | Issue 3 | 29
SKILLS FOR LIFE
What is So Important About
Executive Functioning Competencies? By Chris Abildgaard, LPC, NCC, NCSP IN CONNECTICUT, MOST OF US HAD “REMOTE LEARNING DAYS” THIS PAST WINTER BECAUSE OF SNOWSTORMS THAT BURIED US IN A BLANKET OF WHITE. ONE DAY, AS I SAT AT HOME THINKING ABOUT EXECUTIVE FUNCTIONING COMPETENCIES, I LOOKED ACROSS THE TABLE AT MY 10-YEAR-OLD SON, WHO LEARNS EVERY DAY WHILE STRUGGLING WITH DEFICITS ASSOCIATED WITH DYSLEXIA, TRYING TO KEEP PACE WHILE “LEARNING” ON THE COMPUTER. HE RUBBED HIS EYES AND PLACED HIS HAND ON HIS FOREHEAD WHILE RESTING HIS ELBOWS ON THE TABLE, ALL WHILE TRYING TO TAKE NOTES ON WHAT THE TEACHER TALKED ABOUT. HIS FRUSTRATION SHOWED WHEN HE PUT DOWN HIS PENCIL AND SAID, “DAD, I AM JUST STUPID.” I REMINDED HIM IT WAS JUST HIS BRAIN ON OVERLOAD—THAT IT DID NOT MEAN HE WAS STUPID, LAZY, OR A BAD STUDENT. HE LET OUT A SIGH AND GOT BACK TO WRITING AND RUBBING HIS EYES.
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SKILLS FOR LIFE
M
y son is not the only student who has those thoughts. As a society, we need to be asking ourselves, “Where does that thinking come from?” Has this time period we are living in really had that big of a negative impact on our kids and their mental health? The simple answer is yes. However, there is another major factor really impacting students like my son: executive functioning. Thinking about executive functioning starts with thinking about our brain. We, as educators, mental health providers, and parents, need to remember our brain is a muscle. Many of us strive to work out daily (or a few times a week) to keep our body and mind feeling good, settled, and ready to take on the challenges of the day. That’s great for most of us, but for some of our students, there is a deeper type of exercise that needs to happen in order to strengthen one of the most important muscles we have: working to improve their executive functioning skills. So, these executive functions; why are they so important, and why should we as an educational and mental health community be addressing these cognitive skills? Since the COVID-19 outbreak, education has taken to new models of teaching, and our students have had to tap into different parts of their brains just to keep up. As a result, we see more behavioral is-
sues, sleep issues, cognitive and physical fatigue, and an apparent lack of motivation to engage in the learning process. What research and clinical experience have shown us is that deficits in executive function, defined as one’s ability to modify behavior, emotions, and thoughts in an adaptive and goal-directed way (Lyall, Schweitzer, Schmidt, Hertz-Picciotto, & Solomon, 2017), have a direct and adverse effect on core social and behavioral competencies, such as the ability to accurately encode social cues, understand others’ perspectives, self-regulate our body and language when feeling stressed, and to be able to problem-solve in the moment (Berggren, Engström, & Bölte, 2016). What strikes me as odd is that we don’t consider the importance of keeping our brain in good shape so we can continue to grow and strengthen our competencies, such as creative and critical thinking. We expect people to just “get it” and be able to understand the various processes in the educational and social world. Yet it doesn’t work like that. It is true; our brain is a beautiful thing filled with a variety of neuro-pathways that allow us to access various competencies we have learned to use, understand, and accept as part of our social norm. For example, did you know our executive functions are located primarily in the prefrontal regions of the frontal lobe of the brain, with multiple neural connections to other cortical, subcortical, and
The paths in our brain that lead to our “executive actions” (the behavior or observable motion that indicates our executive function path is clear and working well) are immense. What we have discovered in our work is that if the paths are not clear, if one’s thinking/emotional path in their brain has a barrier in its way, it will impact how the executive actions are carried out. Exceptional Needs Today | Issue 3 | 31
SKILLS FOR LIFE
brainstem regions? The paths in our brain that lead to our “executive actions” (the behavior or observable motion that indicates our executive function path is clear and working well) are immense. What we have discovered in our work is that if the paths are not clear, if one’s thinking/emotional path in their brain has a barrier in its way, it will impact how the executive actions are carried out. The issue for educators, clinicians, and parents is that we can’t physically see that path or the blockage in the path. Thinking back to the example of my son, does he know how to use the computer? Yes. Can he log on to Google Classroom? Yes. Can he access a lecture or worksheet within Google Classroom? Yes. Those are all isolated steps in a process. For him to bring them all together so they create the whole process we need him to achieve, he needs to self-monitor his emotions, inhibit negative thoughts about being in school at home while looking at all that great snow, sequence all these steps he “knows,” and then visually and auditorily process the information being shared on a tiny screen, which may or may not be of importance/interest to him. When one of the pathways becomes blocked—a barrier that impacts his executive actions—we as educators, parents, and mental health providers need to ask ourselves, “What can we do to help students through those moments?” Simply telling them, “I know you can do this,” does not work. If anything, you may be creating more barriers on that path. We cannot take the cognitive processes associated with executive functioning for granted. We also cannot just think executive functioning is about organization. We have to respect all that goes into one’s executive actions, especially during highstress situations. Avoid phrases like, “You did this yesterday,” or “It should only take you five minutes.” Instead, validate what you are seeing. Share a personal example of how this type of work is sometimes hard for you too. Make them feel like they are a part of something and not all alone. There is a huge push in this country to improve our social/ emotional learning within our schools. Encourage your child/
student’s educational team to think about executive goals and objectives that address multiple executive functions. Encourage school districts to make executive function training a part of their curriculum. Let’s be more aware of why these executive function competencies are important to one’s academic success, social and adaptive functioning, and employment. For resources and more information on executive function, check these sites out: • https://developingchild.harvard.edu/science/key-concepts/executive-function/#:~:text=Executive%20function%20and%20self%2Dregulation,and%20juggle%20 multiple%20tasks%20successfully • https://www.understood.org/en/learning-thinking-differences/child-learning-disabilities/executive-functioning-issues/what-is-executive-function • https://www.understood.org/en/school-learning/partnering-with-childs-school/instructional-strategies/ at-a-glance-classroom-accommodations-for-executive-functioning-issues • https://www.sociallearningcenter.org/executive-function-coaching REFERENCES: Berggren, S., Engström, A. C., & Bölte, S. (2016). Facial affect recognition in autism, ADHD and typical development. Cognitive Neuropsychiatry, 21, 213–227. https://doi.org/10.1080/13546805.2016.11 71205. Lyall, K., Schweitzer, J. B., Schmidt, R. J., Hertz-Picciotto, I., & Solomon, M. (2017). Inattention and hyperactivity in association with autism spectrum disorders in the CHARGE study. Research in Autism Spectrum Disorders, 35, 1–12. https://doi.org/10.1016/j. rasd.2016.11.011 Simmons, G., Hilton, D., Jarrett, M., Tomeny, T., & White, S (2019). Considering equifinality in treatment planning for social impairment: Divergent paths in neurodevelopmental disorders. Bulletin of the Menninger Clinic. Vol 83, No 3.
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/
32 | Exceptional Needs Today | Issue 3
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Exceptional Needs Today | Issue 3 | 33
SKILLS FOR LIFE
New Mobile App Helps
People with Different Abilities Develop Authentic Friendships By Ron Sandison
“EVERYONE DESERVES SOMEONE AND EVERYONE DESERVES A FRIEND.”—JULIANA FETHERMAN
J
uliana Fetherman is the creator of Making Authentic Friendships (MAF), a mobile app that helps individuals with special needs (age 13+) connect and make friends based on their age, diagnoses, shared interests, and geological location. She was inspired to create the app by her younger brother Michael, who has special needs and, at the time, difficulty forming friendships. Making Authentic Friendships’ abbreviation (MAF) also happens to be Michael’s initials. Michael was diagnosed with attention-deficit/hyperactivity disorder (ADHD) at age two and autism at age eight. As the older sibling, Juliana’s parents always kept her in the loop with Michael’s therapy and the resources he needed, which inspired her to dedicate her life to helping people with autism and disabilities. Juliana and her parents wanted to find a way for Michael to meet new people as they knew it would help him develop social skills. Juliana shares, “I felt bad doing things and going places without him. When I left Michael behind, I felt guilty because I felt like I was leaving him by himself. I desired to teach him skills to start conversations and keep them going.” Juliana decided to develop the app during her junior year studying business at Sacred Heart University in Connecticut. The first step was to produce a web-based version of the app to get feedback from users’ experiences. Next, Juliana re-
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searched the cost of building an app. With a startup cost of $200,000, she developed a plan to raise money to build the app and website. Juliana raised $15,000 in donations through Crowdfunding, a GoFundMe for businesses. She raised $25,000 through private investors and another $25,000 in golfing charity events. She had a plan to update the app, continue to raise money to keep it going, and a plan to market it through interviews and podcasts. Juliana shares, “We did much of our marketing with old-fashioned hard work. Putting postcards in mailboxes around town and speaking at local autism events. We also shared on podcasts and TV interviews. I received national TV interviews by pitching our story.”
SKILLS FOR LIFE
MAF is unique by focusing solely on friendships and not dating. The app works like a game, making it fun and interactive. Users create an avatar of themselves and can earn coins as rewards. The user picks the outfit, hair, and color of their avatar, matching their interests. Juliana’s favorite function of her app is conversation prompting, which helps the user start and maintain a dialogue by providing conversation tips. MAF is a safe site for people with disabilities to connect. Juliana shares, “We have a web team in place to monitor the app and keep our users safe and to prevent harassment. Any inappropriate language or content gets flagged, and our web team reviews it. We encourage our users not to give personal information on the app and if they feel threatened or harassed to report it immediately.” The MAF app is already helping people with different abilities make friends. A boy living in the United Kingdom told Juliana the app changed his life and gave him the chance to find someone who liked Star Wars just as much as he did. During the COVID-19 pandemic, the user base doubled. With social distancing and classes online, people desire a chance to connect and make new friends. MAF provides that opportunity. The app has enabled Michael to find new friends he now chats with on Facetime. The more Michael uses the app, the more comfortable he is with it. Most of his new connections live in New Jersey, and he is planning on meeting them in person. MAF is currently serving the special needs community in all 50 states, 45 countries, and five continents and has over 3,100 users. MAF also has over 21,000 followers between Facebook and Instagram. In October 2020, Michael and Juliana were guests on the Today Show. “I wish Michael and I could’ve been in person for the Today Show. The Today Show was pre-recorded on Zoom, and we did the interview from our kitchen. It was a humbling experience letting the whole nation know about MAF. I spoke from the heart, and the interview went well.” The TV and radio interviews have also helped Michael gain self-confidence.
Michael and Juliana have always shared a special connection. “It’s nice to have someone who is a built-in best friend. My brother Michael and I have always been very close. Our sibling bond is different. Michael is a man of few words. I do a lot of talking, and he does a lot of listening. Through our app, we have had fun traveling the country and doing TV interviews, and attending promotional events,” Juliana says. At only 24-years-old, Juliana is an entrepreneur and has already accomplished things she never thought possible. Juliana said her goal is to bring awareness to the different abilities community while helping people gain employment and quality of life. Juliana adds, “Our catchphrase is ‘Everyone deserves someone, and everyone deserves a friend.’” Vimeo: https://vimeo.com/399489483/c80cc600fa
Ron Sandison works full time in the medical field and is a professor of theology at Destiny School of Ministry. He is an advisory board member of Autism Society Faith Initiative of Autism Society of America, the Art of Autism, and the Els Center of Excellence. Ron has a Master of Divinity from Oral Roberts University and is the author of A Parent’s Guide to Autism: Practical Advice, Biblical Wisdom published by Charisma House, and Thought, Choice, Action. He has memorized over 15,000 Scriptures, including 22 complete books of the New Testament. Ron speaks at over 70 events a year, including 20 plus education conferences. Ron and his wife, Kristen, reside in Rochester Hills, MI, with their daughter, Makayla. Website: http://www.spectruminclusion.com Facebook: https://www.facebook.com/SpectrumRonSandison Email: sandison456@hotmail.com
Exceptional Needs Today | Issue 3 | 35
BEHAVIORAL HEALTH
Top Ways You Can Identify and Manage
Obsessive-Compulsive Disorder
By J. Edwards Holt
LIFE CAN BECOME INCREASINGLY DIFFICULT WHEN LIVING WITH A MENTAL ILLNESS. NOT KNOWING WHY YOU FEEL A CERTAIN WAY OR FEEL COMPELLED TO DO CERTAIN THINGS CAN EXACERBATE YOUR MENTAL HEALTH CONDITIONS AND MAKE THEM WORSE. IF YOU FEEL LIKE YOU CAN’T CONTROL URGES TO DO OR THINK ABOUT IRRATIONAL THINGS, YOU MAY HAVE OBSESSIVE-COMPULSIVE DISORDER (OCD). LEARNING MORE ABOUT WHY YOU THINK OR FEEL CERTAIN WAYS CAN HELP YOU DEAL WITH YOUR IMPULSIVE THOUGHTS.
What is OCD? OCD, or obsessive-compulsive disorder, features unwanted thoughts and compulsions that interfere with daily life. Those dealing with OCD are caught up in an obsessive and compulsive cycle. The obsessions are continuous intrusive thoughts and distressing feelings. The compulsions are ritualized, repetitive behaviors they engage in to relieve some of the builtup anxiety around these obsessive thoughts. When someone has OCD, their obsessions and compulsions get in the way of their activities and values.
everyone has a psychological disorder. While “obsessing” is a commonly used term, it’s more all-consuming when referencing OCD. Many people experience intrusive thoughts, concerns about a loved one’s safety, or worry about the choices they make. But those who have OCD have constant intrusive thoughts, and these thoughts trigger extreme anxiety.
How to identify the symptoms
If you have OCD, your thoughts and compulsions interfere with your daily life. For example, you may worry you left the light or oven on. It isn’t enough to check once. You must check 10 times to make sure everything is in order. Even after you check the first time, you feel as if you must keep checking.
Most people will experience some form of obsessive-compulsive thoughts in their life. However, that doesn’t mean
Another factor is the context of the obsessive-compulsive cycles. Some people like to keep things neat and orderly, but
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BEHAVIORAL HEALTH
they may simply prefer to have things organized. It’s perfectly normal to want to keep your workplace tidy if you have clients who come through every day. But in most cases, those who have OCD feel they must engage in this behavior but would rather not.
2. Superstitions: Obsessed with what may be considered lucky or unlucky
Common OCD cycles
4. Sexual thoughts: Obsessions about sexual orientation, perverse sexual impulses or thoughts, or obsessions about aggressive sexual behavior
The OCD cycle starts with a compulsive thought. Anxiety rises, the person engages in compulsive behavior, and then they experience temporary relief before the cycle starts again. Most people experience specific obsessions in one or a few categories.
3. Cleanliness: Fear of being contaminated by germs, disease, body fluids, or dirt
5. Perfectionism: Fear of forgetting something or needing to know everything
Some common obsessive thoughts are:
6. Physical harm: Fear of hurting others or oneself; fear of losing control
1. Religious obsessions: Excessive worry about offending God; concerned about morality
Most people who experience OCD understand their compulsions are a temporary relief, yet they find it’s better to have
Exceptional Needs Today | Issue 3 | 37
BEHAVIORAL HEALTH
that relief than to not. Avoiding possible triggers is also considered a compulsion. Some common compulsive behaviors are: 1. Cleanliness: Washing hands excessively, cleaning excessively often, and going well above and beyond the norm to prevent contaminants 2. Double-checking: Frequently going back to make sure things are turned off and doors are locked 3. Counting: Repeating words, phrases; counting to a good or safe number 4. Arranging: Arranging and rearranging things “just so” 5. Hoarding: Accumulating things out of fear of what could happen if thrown away
Ways you can manage OCD According to the International OCD Foundation, the most effective treatment for OCD is a combination of cognitive behavior therapy (CBT) and medication. They specifically recommend Exposure and Response Prevention (ERP), which has the best evidence showing its effectiveness in the treatment of OCD. It is done by a licensed mental health professional, such as a social worker, psychologist, or mental health counselor. This also means appointments with your therapist once or twice a week.
you experience an irrationally anxious thought, you can recognize it for what it is, and this may help you resist the compulsions that follow. 2. Resist OCD compulsions Avoiding situations that trigger your compulsions may be easier, but it will give your obsessive thoughts more power over you by making them seem scarier. You can use ERP to reduce your urge to perform compulsive behavior. Expose yourself to your triggers, and then refrain from performing the compulsive behavior that follows. For instance, if you worry about germs and usually wash your hands three times, wash them once or twice after performing a task. With ERP, it’s best to start by focusing on triggers that give you smaller amounts of anxiety and then build-up to the thoughts that give you the most extreme anxiety. Once you can tolerate the low fear intensity triggers, you’ll build tolerance and confidence to tackle your bigger challenges. 3. Manage your stress If your life is highly stressful, it will likely magnify your OCD. Common anxiety-reducing activities such as exercise, yoga, calming music, getting enough sleep, and avoiding alcohol may help calm your nervous system and alleviate some of your symptoms. Remember, your OCD doesn’t have to control your life. Your thoughts are not reality, and you don’t have to let them affect your self-esteem. If you aren’t sure where to start, seek professional counseling.
If you prefer to start managing your OCD symptoms by yourself, there are a few things you can do. Some tips that may ease the burden of obsessive compulsions are:
REFERENCES
1. Identify your triggers Keep track of your fears and write them down. Rate the intensity of your fear every time you experience the trigger. Once you recognize better what’s triggering you, you may be able to ease the fear in the future. When
“Obsessive-Compulsive Disorder (OCD).”https://www.helpguide.org/ articles/anxiety/obssessive-compulsive-disorder-ocd.htm
“What is OCD?” https://iocdf.org/about-ocd/#:~:text=Obsessive%20 compulsive%20disorder%20(OCD)%20is,that%20trigger%20 intensely%20distressing%20feelings.
“How is OCD Treated?” https://iocdf.org/about-ocd/ocd-treatment/
J. Edwards Holt is an American author who has spent a lifetime dealing with mental health problems. Diagnosed with Tourette’s syndrome, anxiety, and depression at 10 years old, and later OCD and ADHD at 13, success has never come easy for him. After spending most of elementary and middle school isolated, in and out of therapy, Holt managed to turn things around and graduate high school as Valedictorian, later on graduating college with a major in education. Even today as a successful author, Holt still copes with symptoms of his illnesses. Because of this, he is a continued advocate for those struggling with mental health, incorporating bits and pieces of his own experiences in his written works. Website: jedwardsholt.com
38 | Exceptional Needs Today | Issue 3
Kate Makes it Great! PARENTAL SUPPORT
Kate’s Advice for Encouraging Speech and Managing Tempers When there are Different Abilities By Kate C. Wilde I AM WRITING THIS AS I LISTEN TO THE BEAUTIFUL SOUNDS OF DEBUSSY. I AM COMBINING TWO GREAT LOVES: MUSIC AND LOVE FOR OUR WONDERFULLY UNIQUE, SMART, AMAZINGLY RESILIENT CHILDREN ON THE SPECTRUM. I HAVE DEDICATED MY LIFE’S WORK TO THESE BEAUTIFUL INDIVIDUALS. I’VE BEEN IN THE TRENCHES WITH YOU. I KNOW WHAT IT IS LIKE TO DEVOTE YOURSELF WITH YOUR WHOLE HEART AND SOUL TO A CHILD ON THE SPECTRUM. I WAS INTIMATELY INVOLVED WITH EVERY PART OF MY GODCHILD’S FIVE-YEAR SON-RISE PROGRAM®, AND I HAVE LOGGED OVER 20,000 HOURS WORKING ONE-ON-ONE WITH WELL OVER 1,500 CHILDREN OF ALL AGES. THIS HANDS-ON EXPERIENCE PUTS ME IN AN EXCELLENT POSITION TO BE OF HELP. WHATEVER YOU MAY BE FACING WITH YOUR CHILD, I AM SURE I HAVE DIRECTLY EXPERIENCED SOMETHING VERY SIMILAR, IF NOT THE SAME.
M
y late colleague and great friend, William Hogan, once said, “Even if you are at the end of what you believe you can do. Even if you are at your most tired. Even when you have tried everything you can think of and fear that there is nothing left you can do that will make a difference. The universe will provide. There is always another action to
take or thought to hold. Another wave of energy to lift you forward.” This is the space I want to hold for you. Write to me. Tell me about your situation. About your child, your life. Ask me any question. Together we will come up with the next step in your journey with your child. I will read each email and hold you and your family in my heart. For this issue, I have selected three questions from our readers.
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PARENTAL SUPPORT
Janani of Malaysia asks: My son is Dharmeshwar, five, preverbal. I would say his vocabulary increased after doing the Son-Rise Program®. Recently I noticed that he is really trying to say words. But he gets stuck at times. According to your book, The Autism Launcher, you mention to pause. Yes, I did do that. But he will also pause... and look at me...and the moment I request, for instance, “Say ‘O’ for open,” he will immediately say open. Am I doing the right thing? Is there anything I should do to help him say words without prompting? Hello, Janani. Firstly, let me thank you for writing in with your excellent question. It sounds like you are doing great; pausing is an excellent thing to do, and I am happy you are experimenting with it. A few things to help you troubleshoot this: • Try pausing longer. He is finding it challenging to talk, so he may take longer to find the word on his own. It can be tempting to give a verbal prompt too soon. If he is looking at you and is still interested in you opening something for him, believe he is on his way to saying the word. It is just taking longer than you expected. That’s okay; he is on the perfect timeline for him. Give him that time by doubling the length of the pause you are giving. Maybe point to your
40 | Exceptional Needs Today | Issue 3
ear with a delighted “active listening” face, showing him you are ready to listen to his amazing attempts to say the word. • Make sure you have used the word you are pausing for him to say during the activity before you pause. If you know he wants you to open something, as you walk towards him to help him, say the word “open” a few times before you pause. I call this “setting the linguistic scene,” which sets our children up for success. It will be easier for him to pick the word out of his brain if he heard it a lot before you pause. Eva, Mom to Yoseph, writes: I wonder if you could help me with the following: My 17-year-old son has autism and recently finds it increasingly hard to control his temper. He gets very angry about small things and bites his forearm. He quickly proceeds to try to hit himself or someone else near him. He is very angry. Do you have any suggestions as to how to respond in time to avoid him hurting himself and others, please? What may seem small to us can be the very thing that tips our children over the edge of what they can cope with. For example, if Yoseph has been at school and in other environments outside the house, he will have had to deal with the demands of
ARTICLE HEADER
others alongside experiencing sensory overload. It can be hard for us, who do not experience this kind of sensory overload, to really understand how incredibly challenging it can be. Imagine how you would feel if you had to carry a 70Ib weight all day. Then someone came along and innocently asked you to hold one more thing—that might be the straw that breaks the camel’s back, so to speak. I call this tipping point a “Neuro-Crash.” The way Yoseph’s Neuro-Crash could be expressing itself is by biting himself or hitting another person. The great thing is there are things you can do proactively to help reduce his Neuro-Crashes. 1. Favor home and low sensory environments as much as possible. 2. Make sure there is time and space in his daily routine to regulate himself. After school, or when he has come home from an outside activity, give him time to “chill” where you are not talking to him, asking him questions, or getting him to do anything. Time for him to be able to regulate himself. During these times, make an intention to say ‘yes’ wherever possible and not to correct his behavior or speech. I believe this will make a profound difference to him and help him get out of the fight or flight situation sensory overload can place our children in. 3. Let him regulate himself by allowing him to stim. His repetitious behavior and stims are actually his carefully crafted and intelligent regulating system, which are helping him cope with the everyday demands of his world. Do not take these away from him. Let him do them.
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
Ramzi from Algeria asks: Good day, madam. I am an Algerian mother of an autistic fiveyear-old. His disorders appeared at the age of two when he lost his speech, and he did not say any more words. I work with a psychomotor therapist one hour per week and a speech therapist one hour. He is in an autism association two mornings and in a nursery with neurotypical children two mornings. Also, I try to work with him at home, but I do not know too much what to do. I need some guidance; you can help me? (translated by Google) Hi Ramzi, the first place to start is to find out what motivates him. Using his motivations will give him a good reason to talk to you! George, a wonderful, not yet verbal four-year-old with autism, is a great example of this. When I started working with him, his teachers told his mother he was “refusing” to even try to talk. George was highly motivated by Thomas the Tank Engine. He would play with Thomas all day long. His therapists, believing these trains got in the way of his learning, advised his parents to take them away. Would you talk to someone who took your favorite things away? Seeing Thomas the Tank Engine as my doorway to motivating George to speak to me, I did the opposite and created games centered around Thomas. The key to these games was not only did they center around his motivation, but they included me. I did not only want George to speak—I wanted him to speak to me. There is a big difference between our children speaking to themselves and speaking to another person. For that to happen, we want to be a crucial part of the game itself. One such game was me painting my face blue like Thomas and pretending to be the train itself. I drew train tracks on paper to create a train track around the room. As soon as George saw my blue face, he reached over and touched my face, looked in my eyes, and laughed. I put the train tracks on the floor and moved along them, saying the word “move” over and over with the odd “choo choo!” sound effect. He spontaneously gestured for me to pick him up. As I picked him up, I pretended he was a passenger boarding the train, and we zoomed along the tracks together. He was so motivated to play with me that I had plenty of opportunities to ask him to talk. By the end of the session, he had said an approximation of the word “move” and a clear “up.” When I played what he liked the most, he became super motivated to talk. Find out what your son’s motivations are and put them at the center of the games you offer him. Have fun doing this, Ramzi!
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/
Exceptional Needs Today | Issue 3 | 41
THERAPIES AND TREATMENTS
By JC Ellinger
School Physical Therapists
Making Their Imprint IN 2018-2019, ACCORDING TO THE NATIONAL CENTER FOR EDUCATION STATISTICS, THE NUMBER OF STUDENTS FROM AGES THREE TO 21 WHO RECEIVED SPECIAL EDUCATION SERVICES UNDER THE INDIVIDUALS WITH DISABILITY ACT (IDEA) WAS 7.1 MILLION. OR 14 PERCENT OF ALL PUBLIC SCHOOL STUDENTS. IF YOU TAKE INTO ACCOUNT THE STUDENTS WHO ALSO RECEIVE SERVICES UNDER SPEECH OR LANGUAGE IMPAIRMENT, THAT PERCENTAGE EXPONENTIALLY INCREASES TO ACCOUNT FOR OVER 50 PERCENT OF STUDENTS WHO RECEIVE SUPPORT UNDER IDEA.
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THERAPIES AND TREATMENTS
S
upport staff in the school setting present themselves in many forms, but all have the weight of responsibility heavy on their shoulders—a weight of over seven million students to be exact. The roles these special individuals play take the shape of speech therapists, occupational therapists, paraprofessionals such as autism aides, and physical therapists (PT). Many students and parents of neurotypical children may not even be aware support for these specific needs exists. Yet parents who have accessed these services have done so out of necessity, for the support these therapists and aids provide is the bridge that connects children with exceptional needs to their educational goals. School physical therapists are dedicated to working with students in the school setting. Lucie Haisen, PT, MPT, referred to as “Ms. Lucie” by her students, has been working as a school physical therapist in the Los Angeles Unified School District for over 15 years. She shared some of the ins and outs of being a school PT that have helped the kiddos she works with every day achieve heartwarming triumphs such as this: “He had cerebral palsy and autism and was mainly in a wheelchair throughout his day. Although he was non-verbal, made minimal eye-contact, and didn’t understand directions, he loved music. I saw his potential for walking because his core strength and leg muscles were strong enough to support his body weight when we [his mom and I] stood him up. It was months of crawling behind him while I moved his legs through a reciprocal walking motion. His mom held his hands over a walker to teach him to hold on while his favorite songs played on a small portable radio strapped to his walker. Finally, he started taking steps on his own while holding onto his walker!” The peaks and valleys of this impactful job create challenges, but patience and heart work directly toward the development of deserving students. Whether a student is working on holding a pencil so they can create written text for the first time or is building up to standing from their wheelchair, it is the school PTs who play a pivotal role in reaching their goal. Mrs. Haisen added, “The most challenging thing about being a school PT is building trust and a good working relationship with the parents [of the student].” A school therapist will meet with the parent in the initial stages for testing and/or to develop a plan to address the goals agreed
The peaks and valleys of this impactful job create challenges, but patience and heart work directly toward the development of deserving students. upon in conjunction with the IEP (Individualized Education Program) team, but once therapy sessions begin, the parent and therapist do not typically have the opportunity to meet regularly. As a parent, it’s easy to forget when your child has had therapy that day, and I know it is common (just by way of busy schedules) for the therapist to fall out of communication with the parents. As in any profession, there are singular superheroes who go out of their way to make the extra effort. Mrs. Haisen is one of them. She makes the effort to call, text, or email parents throughout the school year to let them know what she is working with the student on. “I also give them suggestions for practice at home and to celebrate progress or new skills,” she continued. With her medically-based PT background, Mrs. Haisen worked with parents more closely on a daily basis, so she understands the value of parents getting to know the therapist one-on-one. Our own experiences can filter into our everyday practices. PTs have the gift of gifting their training, experience, and commitment in the form of therapy to their students. As a parent herself, Mrs. Haisen can relate to the natural worries of being one. And although the current times have changed, she, like many other therapists in the school setting, is still making her mark. Parents and therapists are having to seek opportunities to get creative with their therapy sessions through virtual telehealth. It can be a delicate balance to create a virtual therapy session that still incorporates their goals while making the sessions “fun and engaging.” However, parents can rest assured there are still impactful individuals creating smiles one child at a time. “Students with Disabilities.” National Center for Educational Statistics, May 2020, nces.ed.gov Accessed February 2, 2021.
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
Exceptional Needs Today | Issue 3 | 43
STAYING FIT AND HEALTHY
Keeping a Diabetic Child
Included and Safe During the School Day By Ron I. Malcolm, EdD CLASSROOM TEACHERS CAN OFTEN FEEL THEIR HANDS ARE FULL WITH HANDLING THE DAILY NEEDS OF STUDENTS IN THEIR REGULAR EDUCATION CLASSROOMS. HOWEVER, CHILDREN WITH DIABETES CAN CAUSE SOME UNIQUE COMPLICATIONS THAT CAN OCCUR THROUGHOUT THE SCHOOL DAY. PARENTS CAN ASSIST THESE TEACHERS WITH HANDLING VARIOUS HEALTH-RELATED SITUATIONS BY FOLLOWING THESE 10 TIPS.
1
BATHROOM BREAKS Teachers need to understand your child with diabetes may need additional bathroom breaks. Your child will need to be taught to approach the teacher and let them know they need to go to the bathroom even when regular bathroom breaks are built into their schedule. This may assist your child with diabetes with not having any unnecessary accidents in the classroom
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in front of other students. Teachers need to be aware frequent requests to take bathroom breaks may be an indication your child with diabetes is experiencing hyperglycemia.
2
COUNTING CARBS All individuals dealing with diabetes need to learn how to count their own carbs. Children with diabetes are no excep-
STAYING FIT AND HEALTHY
tion to this rule. Generally, children will receive instruction through a registered dietitian on how to properly count their carbs. However, not knowing if your child with diabetes is doing this at school can cause anxiety for parents. Parents can ask for assistance from their child’s classroom teacher. They can ask the teacher to infuse carb counting into a math lesson, a science lesson dealing with vegetables and fruits, or even a social studies lesson on the history of insulin and why carb counting is important for insulin usage. Teachers who become aware of carb counting can assist with monitoring your child’s blood sugar levels throughout the school day.
3
CLASSROOM AND HOLIDAY PARTIES Many children with diabetes often feel neglected during classroom parties or school holiday events. This is especially true if the event centers on food. Many people are falsely under the impression that children with diabetes cannot get sweets like candy or cookies. While they are not the “best” choice for a child with diabetes, they are generally not the “best” choice for any child. However, a child with diabetes can be taught how to check their blood sugar, adjust their insulin, and be successful in eating a cookie during a birthday event at school. If the cookie is definitely not an option, parents can assist with having alternate snacks available in the classroom. That way your child with diabetes will not feel “left-out” during a special event at school.
4
FIELD TRIPS Parents will need to keep teachers well informed when their child attends field trips with their classmates. An emergency pack should be sent with the teacher. The pack should contain extra insulin, an ice pack, food, and snack items to deal with low blood sugar, glucometer, bottled water and juice, test strips, lancets, and fast-acting glucose tablets. Students on field trips may react differently due to the heat of the day, or the additional exercise they are experiencing during the field day. Having the additional supplies will assist the
teacher with handling the low and high blood sugar levels a student with diabetes may be experiencing.
5
KNOWLEDGE It will be important for parents to work consistently with the child’s classroom teacher. Teachers need to be aware normal blood sugar levels are generally between 80-120 mg/dL. They need to understand the difference between hypoglycemia and hyperglycemia. Children with diabetes can experience these conditions throughout the school day. It will be important for teachers to be able to recognize the signs and symptoms of both conditions. They will need to know how these conditions can be treated in the classroom or at the nurse’s office. If the school does not have a full-time nurse on staff, it will be even more important for the classroom teacher to know how to treat these conditions. If the typical behavior patterns of the child with diabetes appear to change, this could be a warning sign that something is wrong. Remember, all behavior is communication, and during an emergency situation, a child with diabetes may experience confusion and irritation. Hypoglycemia is often referred to as “low blood sugar.” Every child with diabetes will react differently to their low blood sugar episode. Most begin to experience symptoms when their blood sugar tests below 70 milligrams per deciliter (mg/dL). Teachers need to be aware of symptoms with low blood sugar such as confusion with the student, slurred speech, dizziness, sweating, excessive hunger, children falling asleep in class, blurred vision, pale skin, irritability, seizures, or even loss of consciousness. Low blood sugar needs to be treated immediately. A student with diabetes can be immediately administered a high sugar food, candy, or drink to treat the low blood sugar. Some students with diabetes may require a fast-acting glucose tablet. Some students may become ill at school. They may be picking up a cold or flu bug from another student. They may not fully eat their breakfast or lunch at school, causing their hypoglycemia. Parents and the school nurse will need to be alerted immediately when low blood sugars are detected. Hyperglycemia is often referred to as “high blood sugar.” It can generally occur when a blood sugar level spikes above 180 mg/ dL. Symptoms that teachers need to recognize could include: excessive thirst, frequent trips to the bathroom, headaches, trouble concentrating in class, or blurred vision. High blood sugar can be treated by allowing the child to drink water. They may also need to go for a walk with an adult supervising them. Their blood sugar will need to be checked every 20 minutes, or they may need to adjust their insulin intake. Some students may not have taken enough insulin before one of their meals and thus caused their high blood sugar. Some students may be picking up an illness. Others may be stressed about a situation or test at school, and their blood sugar is spiking.
6
504 PLAN Some children with diabetes attending a public school may require a 504 Plan. They may need health-related ser-
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STAYING FIT AND HEALTHY
Students with diabetes may need to be encouraged to wear their medical alert bracelet. Some students with diabetes may not like wearing the medical alert bracelet on their wrist. They may prefer to wear a necklace. Others may have to have a special text message placed on their cell phone in the event they are not able to communicate during an emergency vocally. This text message could be used to alert others of their diabetes.
8
DIABETES EQUIPMENT Don’t assume the school personnel or school nurse is familiar with your child’s diabetic supplies. Not all children with diabetes use the same equipment. Some students use syringes. Others use diabetic pumps or continuous glucose monitors (CGM) that school personnel will need to be trained on how to use properly. Almost all children with diabetes will carry a glucometer with them daily. Some students prefer to keep it with them throughout the day, while others will want to keep it in the teacher’s desk or with the school nurse. The classroom or nurse’s office will also need to have access to a sharps container to properly dispose of used needles or lancets.
vices throughout their school day. The law requires a public school provide a medically safe environment for children with diabetes. Diabetic care is constant. It is a 24 hours/seven days a week process. It is not simply disallowing a child to eat a cookie or piece of birthday cake at school. Diabetes is a diagnosis that substantially limits an endocrine function that would qualify your child for 504 eligibility. If the academic performance of your child is adversely affected by their diabetes, they could qualify as Other Health Impaired and receive an Individualized Education Program (IEP) at their school.
7
EMERGENCY AWARENESS Children with diabetes need to be taught how to self-manage their diabetes-related needs. All children should have an emergency contact form completed and a copy given to their classroom teacher and the school nurse. Emergency phone numbers for both Mom and Dad should be placed in the child’s cell phone in case of an emergency. Students with diabetes can become confused or disoriented. They may forget simple things like phone numbers.
9
SCHOOL BUSES Many children attending public school are riding back and forth to school on a school bus. The first person they may see each day may not be their classroom teacher; it may be their bus driver. It is absolutely essential your school bus driver is fully informed about your child and their diabetes. Some school busses do not have air conditioning, and a child with diabetes can become overheated on a hot day and adversely affect their blood sugar levels. An informed bus driver can also assist in an emergency or at least recognize a potential situation.
10
SELF-MANAGEMENT The ultimate goal of any child with diabetes is self-management. Each student with diabetes should have a Diabetes Medical Management Plan (DMMP) at school. Your child with diabetes needs to be an active participant in developing and managing this plan. Having a “voice” in putting this plan together will encourage your child towards their goal of independently managing their own diabetic needs.
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.
46 | Exceptional Needs Today | Issue 3
EXCEPTIONAL EDUCATION
What Happens When Student Services End
The Vanishing IEP By Toby Tomlinson Baker
CHANCES ARE WE ALL KNOW A STUDENT WITH A DISABILITY. THERE ARE ABOUT SEVEN MILLION TEENS IN THE NATION WHO CURRENTLY HAVE AN INDIVIDUALIZED EDUCATION PROGRAM (IEP), THE DOCUMENT THAT IS WRITTEN ANNUALLY AND SPECIFIES THE EXACT SERVICES EACH STUDENT WITH DISABILITIES RECEIVES THAT HAS SUPPORTED THEM ALL THROUGH SCHOOL.
B
ut the second these students graduate from high school and enter college, their IEP vanishes. Twelve percent of all students enrolled in college have disabilities. Many families wonder what happened to their child’s IEP. They ask, “How will my child receive the help they need during college? How can we deal with the ‘Vanishing IEP?’” The protections for students with disabilities written in their IEPs are covered by the Individuals with Disabilities Education Act of 1975 (IDEA). This legislation no longer applies once a student with disabilities graduates from high school. So, if this law does not apply to post-secondary students with disabilities, what laws do apply? The Higher Education Opportunity Act was enacted in 2008, which was the first time in 40 years legislation focused on postsecondary students with disabilities. In 2019, the Higher Education Act was reviewed for reauthorization, yet lawmak-
ers in Washington reached an impasse. Even though there have been many changes in higher education impacting these students, no legislation has been amended. Currently, there is no consistent mandated legislation protecting students with disabilities in higher education. Since the IDEA is obsolete, the Americans with Disabilities Act (ADA) seems to be the go-to for legislation in higher education. The ADA’s protections are very broad and do not apply specifically to students with disabilities. Postsecondary students with disabilities need IEPs to have the same services as they had in high school. Not enough students with disabilities are making a successful transition from high school to college or other training programs. Students with disabilities enter college with the dream of graduating. Yet too many students are failing their classes, dropping out or, as experts say, “departing.” In fact, 72 percent of post-secondary students with disabilities departed last year!
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EXCEPTIONAL EDUCATION
right now by higher education faculty. Higher education institutions can start by training all their faculty in disability studies. They can change their policies to have mandatory training on disability topics at least once a year. Furthermore, they could have a disabilities expert on-hand, besides their Accessibility Officer. They could establish faculty meetings with students with disabilities every semester and they can stress the importance of having a healthy faculty/student-with-disability relationship.
Since many students with disabilities who enter colleges after high school do not want to be labeled, or perhaps wish to shed their disability, they refrain from utilizing self-disclosure for academic assistance. Furthermore, privacy laws such as the Family Educational Rights and Privacy Act (FERPA) prevent families from stepping in and assisting their college teens. However, even for students who disclose their disability, there are still many concerns in higher education that are ignored, such as testing accommodations, resources, and advocacy. One major issue is faculty support and their implementation of appropriate accommodations in the classroom and online setting. Since changing the national law is time-consuming, particularly during a pandemic, there are things that can be done
If the IEP was an approved document at all colleges and universities, these institutions would have much more information to provide better accommodations for their students. The stigma of students with disabilities and the retention rate would be reduced. If the IEP traveled to college, more students with disabilities would graduate! As a researcher and PhD candidate at Pepperdine University, Toby Tomlinson Baker’s doctoral work focuses on higher education faculty training, self-advocacy for students with disabilities, and policy reform. She has 12 years of experience teaching Special Education. She is the recipient of LDA’s 2020 Sylvester Award and CHADD’s 2018 National Educator of the Year. Email: tobytomlinsonbaker.net
Most approaches to enabling children with autism to speak either don’t work or alienate the child…or both. The Autism Language Launcher gives you something totally new: a step-by-step guide that ignites language lift-off by:
ilde
Kate C. W
Tapping into your child’s innate intelligence (often unrecognized by others) Going with your child instead of against your child Building the relationship necessary to inspire your child to want to communicate Giving you the tools instead of outsourcing them to someone who doesn’t care as much as you do Providing techniques that work with adults on the spectrum, too! If you are a parent, relative, professional, educator, or caregiver of a child or adult who is: not yet verbal, making some sounds, using some words, speaking in single words, or using two-word phrases, then this book is for you. In a caring, understanding, and deeply supportive way, author Kate C. Wilde uses her decades of experience with children and adults on the spectrum to show you how to break through and finally enable your child to: Begin speaking and communicating Build their vocabulary…willingly Expand sounds into words and words into phrases Ask and answer questions Construct their own original sentences (rather than simply repeating rote phrases) Share their thoughts In addition, you’ll learn to effectively address your child’s echolalia, repetitious language, and repetitive questions (without scolding your child, stopping your child, or “doing battle” with your child) in a way that your child will find supportive, bonding, and even joyful.
Buy it on Amazon
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A Parent’s Guide to Helping Your Child Turn Sounds and Words into Simple Conversations
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FINANCIAL FOCUS
Government Benefits for Special Needs Facts You Need to Know
By Ryan F. Platt, MBA, ChFC, ChSNC, CFBS “GOVERNMENT BENEFITS” IS SUCH A BROAD TERM. THESE BENEFITS CAN VARY FROM INDIVIDUAL TO INDIVIDUAL, BUT THERE ARE SOME THAT TEND TO BE UNIVERSAL FOR MOST PEOPLE WITH AN INTELLECTUAL AND/OR DEVELOPMENTAL DISABILITY. SUPPLEMENTAL SECURITY INCOME (SSI) AND MEDICAID ARE TWO SUCH BENEFITS. THESE BENEFITS REQUIRE THE INDIVIDUAL TO HAVE VERY LITTLE ASSETS AND INCOME TO QUALIFY, BUT THEY ARE THE GATEWAY TO MANY SERVICES AND OPTIONS. SSI WILL PROVIDE A MONTHLY INCOME, AND MEDICAID PROVIDES HEALTH CARE AS WELL AS MANY LONGTERM SUPPORTS AND SERVICES THAT ALLOW INDIVIDUALS WITH SPECIAL NEEDS TO LIVE AND THRIVE IN THE COMMUNITY!
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ost individuals do not qualify for SSI and Medicaid until they turn 18. The reason for this is because, before the age of 18, Social Security and Medicaid consider the income and assets of the parents of the child with a disability when determining financial eligibility. However, once the individual turns 18, they are considered a legal adult, and therefore the finances of the parents are no longer considered in the application for SSI and Medicaid. This is why it is so important to have a clear understanding of the necessary financial structure that must be in place so your loved one can always qualify for these benefits.
How can my child receive the maximum amount of SSI? For so many individuals with a disability, age 18 is critical. In the United States, this is the age your child becomes an adult in the world of government benefits, which means only their income and assets are the resources Social Security will consider when they apply for SSI. As long as you have
no custodial accounts (UTMA, UGMA), no savings or checking accounts, no Roth IRA, no investment accounts, and nothing titled in their name, they will qualify from a financial perspective. This means if they have a qualifying disability, they can be approved for SSI. SSI (Supplemental Security Income) is a monthly income. Once approved for SSI, if the individual is living with their parents or guardian, they will receive two-thirds of the maximum amount. To be approved for the maximum SSI benefit, the parent or guardian must charge their loved one rent (or a portion of expenses). Charging rent requires another step, after your loved one is initially approved, with additional paperwork and conversation with Social Security. It may take some extra effort and time, but it will be worth it!
If my adult child with a disability has a job, where can they save money that will not disqualify them from benefits? I have had so many parents call me, excited their child is working part-time and is eligible to save money in the company
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FINANCIAL FOCUS
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, multigenerational plan. 401(k). I immediately cringe because I know that account will jeopardize their government benefits and services at some time in the near future. 401(k)s, like checking, savings, investment, and many other types of accounts, will count against your loved one in calculation toward the asset resource limit for qualification to keep their benefits. The one account that is safe for your child to save their money in is an ABLE Account. The value inside of an ABLE account does not count towards the asset resource limit to keep government benefits. This means your child can continue to save money inside of an ABLE Account and not be concerned with the accumulated value inside (until it reaches $100,000), and it will not negatively impact their government benefits.
What are Medicaid Waiver programs? Medicaid Waiver programs provide services that allow individuals to live in the community instead of being forced to live in an institution. The waivers are state-specific and permit states to provide services to a targeted group of individuals, specific geographic locations, and select service
providers providing services to individuals who may not otherwise qualify under the existing Medicaid rules. This means children under the age of 18 who live with their parents can qualify for services through a waiver program within their state. Each state can have multiple Medicaid Waiver programs that serve different purposes. There are some waiver programs that can have a long waiting list before your loved one gets approved for services, but please don’t be deterred. These waivers provide services that can help your loved one live in the community by finding proper housing, supporting them in the search for employment, connecting them with day programs or volunteer work, and providing assistive technology. They can even provide services for caregivers, including respite. 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
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PARENTAL SUPPORT
Being an Exceptional Parent:
Nine Ways to Nurture Your Own Special Needs By Tasnuva Sarwar Tunna, PhD NO ONE TELLS US HOW TO BE A PARENT, LET ALONE A PARENT FOR CHILDREN WITH EXCEPTIONAL NEEDS.
I
was on the precipice of losing myself to suicide. The darkest hours of my life entail the soul-wrenching questions: “Why me?”, “How can I raise my son when I don’t even know how to raise myself out of this pit?” I didn’t get to study Special Needs Parenting 101...did you?
We are not given a manual, and yet we are given the most complex set of parenting/parenthood puzzles in raising a child with different abilities. My journey from that to lifting my head above water and helping other moms lift theirs has taught me a few important survival tactics I am revealing to you today.
1. MINDSET MATTERS It all starts with the right mindset. Mindset is our cultural and societal beliefs we curate from birth onwards. The conscious part of the mind is only 10 percent, while the rest is subconscious. This part is actually the driver we don’t acknowledge. Our minds play games. We tell ourselves negative things all throughout the day. Of the 50,000 thoughts coming to us in a day, only 20 percent are positive. Eighty percent are negative, self-deprecating ones! Imagine that. We beat ourselves, we cheat ourselves, and we pretty much incapacitate ourselves from being our best just
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PARENTAL SUPPORT
Persevere such that your weakness becomes your strength, and your strength becomes your superpower! We were new immigrants with mountains of debt and a special needs child, one low wage income from an ever-working spouse, no friends or family, and no one to take the burden off my shoulders. I ate to feel good, to find the strength to do chores, to move my battered “just gave birth body” to take care of the kids. It took me one full year to recognize I was eating to make myself feel good since no one was telling me I was doing MY best already! by our negative thoughts. So, starting today, be “conscious” of your thoughts. Every time your mind starts spinning into a void of unhappy and negative thoughts, say PAUSE or STOP out loud, with a mental flashing red sign. You are the ruler of your mind; don’t let it run loose and rule you! Just as you are what you eat, you are what you believe! 2. TRAINING YOUR EMOTIONS Oh, God! That’s the hardest, right? I took the longest amount of time (33 years, to be specific) to train my emotions. It is a constant work in progress. Spinning tales of what-ifs won’t take you anywhere. Trust me, I have thought 100,000 thoughts a day to try to think my way out; it didn’t work well. We can handle our emotions just like we can handle pretty much anything else. It’s like Pavlov’s dog experiment. Our brain is retrainable; scientists call this “neuroplasticity.” You can mold your brain and mind to think well. You can also think well and feel well just by telling your brain and mind to feel so. If you are saying it doesn’t work that way, then you are resisting. For the next 28 days, take a Feel-Good Challenge. Every time you feel a negative emotion, hit pause, and focus on all the things you love and are grateful for. Gratitude journaling first thing in the morning is an awesome start to the day. Gratitude is not just saying an empty “thank you”; it works when you genuinely find things you are absolutely crazy about. You are alive and reading. This means you have at least 10 things to be grateful for right at this moment. Start counting: One, you are a great parent. Two, your munchkin is the absolute cutest. Three… 3. DON’T EAT OR DRINK YOUR EMOTIONS I was always slim and trim. In the late stage of being pregnant with my youngest, I started eating my way to feeling good.
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It hit me like a bus after talking to many parents reluctant to take some responsibility to improve their child’s condition. The fact I didn’t harm myself or leave my kids or abuse them and was fighting to help improve their conditions while totally forgetting myself was the living proof I was doing a great job already. And that realization took away the need to eat my way out. Find the reasons why you feel unworthy or not enough and call them out. You will almost invariably find the solution to greater emotional and mental wellbeing by identifying your emotional needs. 4. PUT ON THE O2 MASK FIRST Without being too selfish, try to design your day in a way that you fill your cup first. Build a morning routine, waking up a little earlier and recalibrating your brain and mind for the day. Visualize how you want the day to go. Eat first, meal prep, meal plan, batch cook, do less social media scrolling, find pockets of time you waste, and utilize them in needle-moving activity. I had a client who was so stressed into wondering what she would do with her child that she wasn’t finding time to read the guidelines I provided that would help her child in the first place! YES, we all do that. We focus too much on the problems and not enough on the solutions. This brings me to the next point. 5. FOCUS ON THE SOLUTIONS Find, research, read. Experiment small shifts rather than accepting that special needs parenting is all gloom and doom. Ask questions and try finding answers too. Merely thinking won’t give answers. Don’t move in circles. Sit down with the problem and give that proper attention. More often we just think and think in the backend without giving the problem enough attention and focus. Energy flows where attention goes. Seek, and ye shall find!
PARENTAL SUPPORT
6. UNEARTHING LIMITING BELIEFS Who said you can’t be an awesome parent? Auntie Jenny? Forget her. Every time you give an excuse, find the WHY behind the excuse. Feeling low on energy? You need to confront your fears to start that project. Low on money? It’s not how much you earn; it’s how you spend it. Not enough time? Organize, plan, and execute. Oprah and Beyoncé both have 24 hours. Focus on accomplishing only the most important impactful task in any given day. And execute, execute…execute! If you want to do something, you WILL find a way. If not, then you will find an excuse (or many). 7. BRING IN GAME-CHANGERS (AKA YOUR SPOUSE/PARTNER) Have a heart to heart every day, even for five minutes. Don’t utter “We need to talk”; that will blow off their brains! Ask questions, listen more, and empathize, and you will see your spouse reciprocating. When you give good energy and love to someone, they almost invariably will give it back. Your spouse is not the Almighty—they do not know all. They need clear directions. Don’t just assume they will see your need. Discuss and come up with a Sharing Responsibility Plan. 8. ORGANIZE, DELEGATE, DELETE A few months ago, I consciously cut myself out of a social relationship when I found it was more of a chore than a blessing. You don’t need to accept all invitations to interact if that drains you. Find like-minded people with whom to hang out. Peer pressure is never a healthy part of life. Organize your day and your responsibilities by importance. Always ask, “Is this a needle-moving activity?” If so, then execute. If not, next please.
Tasnuva Sarwar Tunna, PhD, is an Autism Health Coach, neurodiverse herself, and an autism mom. She advocates and coaches one-on-one to anxious autism parents in helping their autism children achieve transformative improvement and developments. She is a pharmacist, published scientist, educator, and author. She cooks and absolutely loves books. You can sign up for her newsletter where she shares massive transformational resources for parents’ mental health, autism health, and wellbeing, as well as nutrition and lifestyle. Facebook: https://www.facebook.com/groups/276102687017998 Instagram: https://www.instagram.com/the_neurodiverse_nerd/?hl=en LinkedIn: https://www.linkedin.com/in/dr-tasnuva-tunna-phd-autismhealth-coach-24a79470/ Blog: www.neurodiversenerd.com
Ask others for help. Declutter, give away, help others in need. Give love to yourself and others. If you are alone with no one, then ask for social assistance. Ask your own self. Ask God. He never fails to show up! Engage in needle-moving activities and remove all fluff from your to-dos. 9. DON’T LET YOURSELF OFF THE HOOK You are not the first or the last exceptional needs parent. Let’s not get caught up in that loop. The day I consciously determined to change the course of my life by taking responsibility for change was the best day spent in my life. Find an outlet that will help you emotionally and financially. Write a blog, do photography, learn new skills (Skillshare is great, or YouTube), plan for a vacation, start a side gig that earns something, or better yet, make that side gig into a business from home. Options are indeed endless if you give yourself permission to see them! I made this motto to help me get out of the biggest challenge of my life, and that is: “Persevere such that your weakness becomes your strength, and your strength becomes your superpower!” Making that up and sticking to all surfaces helped me start believing I have power, and it changed our lives. You can too! You are in control of your destiny and what happens to you and your child. Own it, and you will win! I would absolutely love to hear what’s holding you back. Let’s do this together!
ValiantFutures.com
off ice@valiantfutures.com 760-854-4003
WE STRIVE TO MAKE SMART FINANCIAL PLANNING ACCESSIBLE TO ALL FAMILIES. • Who will care for my child when I’m gone? • How do we access and keep public benefits? • How much money will it take to support our child?
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FINANCIAL FOCUS
Planning for a Lifetime:
Key Considerations for Parents of Special Needs Children By Jeff Vistica, CFP™, ChSNC®, AIF®
ACCORDING TO THE CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC), DEVELOPMENTAL DISABILITIES AFFECT APPROXIMATELY 17 PERCENT OF CHILDREN AGED THREE TO 17 IN THE UNITED STATES. AS MEDICAL ADVANCES HAVE CONTINUED, IT’S BECOME MORE LIKELY CHILDREN WITH SPECIAL NEEDS MAY OUTLIVE THEIR PARENTS. ACCORDING TO THE NATIONAL DOWN SYNDROME SOCIETY, THE AVERAGE LIFE EXPECTANCY OF A PERSON WITH DOWN SYNDROME IS 60 TODAY. IN 1983, IT WAS ONLY 25.
T
he Journal of the American Medical Association suggests the lifetime costs for caring for a person with autism to be $2.4 million.
As parents and caregivers to children with special needs, we’re faced with challenges most can’t imagine. The University of Wisconsin did a study that demonstrated mothers of children with autism had stress hormone levels similar to soldiers in combat! This stress emanates from ongoing worry for the health and safety of your child, guilt you did something wrong, feeling like you need to be an expert on your child’s physical or cognitive impairment, tirelessly advocating for medical treatments, school programs, and accommodations, and paying for it all. Here are five important considerations, along with resources, for parents of special needs children:
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1
EMOTIONAL WELL-BEING FOR THE ENTIRE FAMILY Parents of children with developmental disabilities have higher rates of physical and mental health issues than parents of children without these conditions. Are you taking time to look out for your emotional and physical well-being? Having a child with special needs places enormous stress on a marriage and other relationships. Too often, parents ignore their own mental health issues because they are understandably overwhelmed with caring for their child. You can find a helpful list of support groups for parents of children with special needs here.
2
FINANCIAL PLANNING Planning and getting started early is critical for parents of special needs children. Understand the ongoing estimated costs to help support your child. Set up a third-party special
FINANCIAL FOCUS
3
ESTATE PLANNING When you set up your estate planning documents, take the time to understand how to choose a trustee and trust protectors. The job of the trustee is to act in the best interest of the beneficiaries of the trust by safeguarding its assets and ensuring they are used as required by the terms of the trust. A trust protector’s job is to supervise the trustee and protect the beneficiaries from any misconduct by the trustee. The trust protector can also perform other duties, including replacing the trustee, assuming those powers are granted in the trust document. The appointment of a trustee and a trust protector are among the most important decisions you’ll make to start building a support system for your loved one. A skilled attorney and advisory team can help make this difficult process less overwhelming and will be indispensable to you and your family.
4
LIVING ARRANGEMENTS As your child ages, don’t wait to start looking for housing arrangements. You’ll want your loved one to be comfortable with the new living arrangements, and you’ll also want to help when you are able. It may be difficult for your family but imagine how much harder it would be to find housing when you’re gone.
5 needs trust before your child turns 18. Inform and invite family members to participate in building financial security for your loved one. Anyone can contribute to the third-party trust, and every little bit will help. If your child is receiving Supplemental Security Income (SSI), paying for food and shelter from a special needs trust will cause a reduction in SSI benefits. That may be a worthwhile tradeoff if it’s the only way to meet preferred housing needs. You can pay for things like personal care, vacations, or therapies not covered by Medicaid using the trust.
LETTER OF INTENT How will your child be cared for if you were no longer alive or able to do so? One thing you can do is start writing down information about your child that would be helpful to a new caregiver. Doing so is known as writing a letter of intent, and it’s one of the most important documents you can prepare for your child with special needs. The letter of intent should include an overview of your child, information about daily schedules, diet, medical care, education, benefits received, employment, social activities, religious activities, behavioral issues, and even funeral arrangements. Once you address these issues, you may find comfort in knowing you have taken the time and effort to do your best to plan for the transition your child with special needs may ultimately confront.
Jeff Vistica, CFP™ (Certified Financial Planner), ChSNC® (Chartered Special Needs Consultant), AIF® (Accredited Investment Fiduciary) is the co-founding partner of Valiant Partners, a registered investment advisory firm, located in Carlsbad, Calif. Valiant Partners devotes its practice exclusively to serving the needs of parents with special needs children. Website: www.valiantfutures.com
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MY WORD
Hal’s Books, Our Story By Jane Hawkes THE TRUTH IS, WE NEVER INTENDED TO WRITE A BOOK, LET ALONE TWO! IT KIND OF CAME ABOUT BY ACCIDENT, BUT BOY, AM I GLAD THAT WE DID. OUR BOOKS HAVE TOUCHED SO MANY PEOPLE, AND WILL AND I CONTINUE TO REACH OUT TO SCHOOLS AND ORGANIZATIONS TO TELL THE STORY OF HOW WE OVERCAME SO MUCH TO PUBLISH OUR BOOKS.
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he opportunity came quite by chance when I met children’s author Jude Lennon at a business networking event. I told Jude about my son Will, who was 16 at the time, and how he was diagnosed with autism at a young age. He was attending a special school and constantly anxious about what he was going to do when he graduated. After chatting for a while, half-jokingly I said to Jude, “We should write a book.” I didn’t expect an established children’s author such as Jude to take me seriously, but two weeks later, Jude called, and a meeting was set up to discuss the project further.
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Will first entered the special needs system at age two when he struggled to speak. He went on to attend a pre-school with additional support and then a mainstream primary school, again with teaching assistant support. He was diagnosed with autism at age six and later also diagnosed with dyslexia and dyspraxia. All throughout his primary and secondary education, Will continued to receive speech and language therapy to develop his speech and communication skills. Now, as a 19-year-old young man, it is hard to tell he ever had any issues with his speech at all. Because of his dyslexia, Will struggled to read. The books he had access to at school for his reading age were childish,
MY WORD
which made him struggle with finding the motivation to read. When the opportunity arose to create his very own book, Will thought back to this time and thought how wonderful it would have been to have a book such as this to read: a book with a main character he could relate to, a dyslexia-friendly font, and short accessible chapters. Now he had the opportunity to create one and help others who feel as he did. “There were no books with heroes or lead characters that were like me,” said Will. “This made it really difficult for me to relate and identify with characters in books. For a long time, I’ve wanted to address this issue and publish my own book which will help other children with autism feel more included.” After a short period of time, an initial meeting with Jude was planned. Will had developed a plot, characters, and a story to tell Jude for his first book. Jude went away and wove the initial ideas from Will into a chapter book suitable for children aged nine to 12 years old. The first book, Hal and the End Street, focuses on the main character, an autistic teenager named Hal. Through Hal, Will was able to convey all the anxieties he feels about his everyday life, such as disliking strangers in the house, loud noises, or unexpected changes in routine. He was able to show how he copes with these feelings and share the strategies he has in place to reduce his anxiety. He described his anxiety as a bubble that starts in his stomach and just gets bigger and bigger. If he does not put in place the strategies he has developed, the anxiety gets so big it becomes overwhelming. Cleverly, the books have two outcomes to choose from at the end of each chapter. The reader can decide to end the chapter by reading version A or B. Ending A doesn’t have such a good outcome for Hal, but with ending B, Hal puts into practice the strategies he has learned, and his day has a much more positive outcome.
Once the book was written, Will was tasked with illustrating the book. He had to decide where the pictures would go in the story and what they should be. Being autistic, Will felt he knew just what Hal should look like. The book is set in the 1970s, and Will enjoyed researching the fashions and trends of the time. However, during this time, Will struggled with his confidence. He felt his drawings were not good enough and that nobody would like the book. It took encouragement from everyone around him every day for him to begin to believe in himself. Once the book had been edited, and the designers had put together all the pictures and text, it was finally time for Will to see his book in print. The next part of the journey was promoting and talking about the book. Still just 16, Will was at first very apprehensive about speaking about what he had achieved. Two book launch events were held. Slowly, Will’s confidence grew, and his anxiety subsided. The second book, Hal and the Parties, was published a year later and continues the story of Hal, but now it’s 1977, and Hal celebrates his 16th birthday. Will was much more confident about the process of illustrating his second book, having had the experience of illustrating and publishing the first one. It had been a huge success, becoming an Amazon #1 Best Seller with great reviews, so some of Will’s anxieties had been dispelled and reduced. Will is now 19 and studying Level Three Art and Design at a local college. He has ambitions to go to university to study graphic design. Having autism shouldn’t stop anyone from fulfilling their ambitions and reaching for the stars. Will uses his neurodiversity as an advantage to fuel his creativity and imagination. We are incredibly proud of what he has achieved.
Jane Hawkes has worked as an autism advocate for many years. In 2017 she embarked on an enterprise with her 16-year-old autistic son Will and children’s author Jude Lennon to publish children’s books with an autistic protagonist. Jane continues to advocate for autism. She makes presentations to schools about their inspiring journey to become book publishers and their “Awesome About Autism” assemblies. Hal and the End Street: www.amazon.com/Hal-Street-Awesome-About-Autism Hal and the Parties: www.amazon.com
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SKILLS FOR LIFE
Essential Social Skills and Communication for ALL Teens By Kirt Manecke SOCIAL SKILLS ARE THE TOP FACTOR IN GETTING A JOB, ACCORDING TO HARVARD UNIVERSITY. IS YOUR TEEN PREPARED? SOCIAL SKILLS ARE POWERFUL SKILLS. THEY HELP US MAKE FRIENDS, GET AND KEEP A JOB, AND HAVE A FULFILLING LIFE. SOCIAL SKILLS CAN SOMETIMES BE CHALLENGING FOR TEENS WITH SPECIAL NEEDS. The following activities will help you assist your teen or student in improving communication and social skills:
• What does a lack of social skills look like to adults? To parents? To other teens?
Communicate with adults
• What could have been done to improve communication?
Your teen will gain awareness of the importance of people skills when communicating with adults.
• Have your teen or student describe how they could have used good social skills to improve communication at their event.
Ask: “Think about a recent time in your life when you felt awkward around adults. Some examples are a wedding ceremony and/or reception, a funeral, or meeting adult acquaintances of a family member for the first time. Tell me about the event. Describe the actions of the adults and how you reacted.” (Parent or teacher may share an event from their teen years as an example.)
Discuss and roleplay
Discuss essential social skills and your teen’s experience during that event. Here are some suggestions on how to guide your discussion:
Roleplay scenario: Ted is sitting at a table and face-to-face with his family at a restaurant. Inappropriate communication: While Ted is talking to his mom, he pulls his cell phone out of his pocket, looks down, and quickly checks for messages. Then he puts his cell phone back in his pocket. He does this every five minutes.
• Describe actions that illustrate good social skills used by the adults and your teen.
Professional communication: Ted is talking to his mom uninterrupted while making consistent eye contact. His phone is turned off and either left at home or put away.
• Describe actions that did not illustrate good social skills used by the adults and your teen.
Quiz: You are at the dinner table at home with your family and your cell phone rings, pings, or vibrates. What do you do?
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SKILLS FOR LIFE
Correct answer: Ignore it. Roleplay scenario: Assign another teen or yourself as a partner. Roleplay having a conversation with a friend, an adult, or a customer. During the conversation, the teen’s cell phone rings, pings, or vibrates. The teen should ignore their cell phone, maintain eye contact, and continue the conversation. I can’t stress enough the importance of making a powerful first impression. As Will Rogers said, “You never get a second chance to make a good first impression.” A smile can create a friend. It can create a customer for life. Smiling is one of the most important social skills. Have your teen read the following two paragraphs, then have them practice the skill by roleplaying with you or another teen.
Smile and say hello This may sound basic, but you’d be surprised how many people fail to greet others, whether family, friends, or customers, with a smile. When you meet someone socially, focus on that person and greet them with a smile. When customers enter your workplace, greet each one promptly and politely.
while at work. The only exception is if it’s a tool required for their job. Here are some guidelines to share with your teen: • Be careful. Whatever you text or post online lasts forever. Make sure it’s positive and that you are always nice. • Photos last forever. Always ask a person’s permission before taking or posting their picture. • If a personal email or text upsets you, don’t respond right away. Wait at least 24 hours. This gives you time to think about it. • Don’t let your conversations be interrupted by text messages or cell phone calls. The exception is if it’s your parents or guardian or a true emergency.
Here’s how:
• It’s okay to suggest that phones be turned off or left on vibrate when spending time with your friends.
1. Smile—make it a warm, genuine, heartfelt smile
Leave your electronic devices off or silenced:
2. Look people in the eye
• When you are at the dinner table.
3. Say “Hello!”
• Anytime you are with people who want to have a face-toface conversation with you.
4. Speak in a warm, upbeat, and friendly manner, and be sincere
Turn off the electronics If teens are engrossed in an electronic device, they are not fully focused on the people around them. Cell phones, games, videos, texting, and surfing the internet all keep teens from practicing essential social skills. When used too often or inappropriately, they can get in the way of your teen’s face-to-face social relationships. Teens should NEVER use their cell phone or other digital devices for personal use (texting, emails, phone calls, games)
• When at movie theaters, libraries, restaurants, places of worship, in class, and other public places. • When at work (ALWAYS). If you are not sure, just turn them off. These tips will ensure teens make a powerful first impression to succeed in school, work, and life. Parts taken from “Smile & Succeed for Teens: Must-Know People Skills for Today’s Wired World” Copyright © 2014-2021, and “Parent’s Guide for Smile & Succeed for Teens” © 2017-2021 by Kirt Manecke.
Kirt Manecke is an award-winning author. Endorsed by Temple Grandin, his book and new online course, Smile & Succeed for Teens, is a crash course in social and career skills. It is also available as an audio book. Classroom packs with teaching guide are available. The online course is ideal for at-home or virtual learning. For career skills training for adults with special needs, Kirt’s book Smile: Sell More with Amazing Customer Service is a 60-minute crash course in customer service and sales. Website: www.SmiletheBook.com Email: Kirt@SmiletheBook.com
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PARENTAL SUPPORT
in crowds or waiting in lines. I’m a firm believer in bringing special needs kids out into these tricky situations. Behavior therapy and social stories are great to set up a foundation, but there must be practice outside of the house and therapy centers. The best way to put those skills into practice is out in real-life situations. During this time of COVID-19, we are facing some extra challenges. I started practicing wearing a mask in the house for short periods with him. We watched some YouTube videos about mask-wearing as well. It’s best to start slow and increase the amount of time your child wears the mask. Breaks are also a good idea, maybe going outside or in the car for a few minutes. Being prepared by having wipes and sanitizer on hand is also now more important than ever.
Making Outings Easier When Children Have Exceptional Needs
By Diana Romeo VENTURING OUT IN THE WORLD WITH A SPECIAL NEEDS CHILD IS SOMETIMES AN ACT OF BRAVERY. I SHOULD KNOW—I AM A VETERAN AUTISM MOM. MY SON IS 19 YEARS OLD AND SWEET AS THE DAY IS LONG. HE CAN ALSO BE UNPREDICTABLE, RIGID, AND A CREATURE OF HABIT. PULLING HIM OUT OF HIS COMFORT ZONE OR JUST GOING OFF ROUTINE CAN BE VERY DIFFICULT. WE EXPERIENCE MELTDOWNS WHICH CAN INCLUDE YELLING, BITING HIMSELF, BITING ME, PUSHING, FLAPPING, AND GENERALLY CREATING A RUCKUS.
M
y boy loves to eat, so going out to a restaurant is a great way to get us out of the house. I try to combine a few errands with a stop for lunch or a snack. He likes to browse toys and books, so Target and Walmart are great places to take him. He can practice social skills, and I can accomplish a little shopping. Unfortunately, he is not very patient when it comes to waiting. He doesn’t do well
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Over the years, I have cobbled together strategies that help us ease some of the behaviors that arise when my son is anxious. Some days are better than others, and there are definitely times we abandon ship and head home. I do find that, more often than not, we can forge ahead even if we have to modify our plan or timeline. Choose which ideas appeal to you and are most appropriate for your child.
Flexibility is the name of the game Always choose non-peak hours. I don’t love eating lunch at 11:30 am, but it’s the time that works best for us. There’s no line. There isn’t a long wait for food, and it’s generally quieter in restaurants at this time—ditto for dinner at 4:30 pm. The early bird catches the worm! It’s also helpful to pull up the menu online beforehand so you know if the restaurant offers food your child likes or can accommodate any special dietary restrictions.
Busy minds equal quiet times If your child has a hard time waiting in any situation, be it in a restaurant for food or in line at a store, here are some ideas to keep them occupied: • When at a table, you can play games such as hangman or practice spelling (at an easier level than they can manage; we don’t want frustration, just to be occupied). Asking simple math questions (what’s two plus two?) or bringing out flashcards works here too. Asking what a child sees or hears nearby or playing I Spy for a longer period can be done almost anywhere. Activity books can be great distractions or focusers, such as dot to dot, word searches, word scrambles—again, keep the level simple—and of course, coloring. • Other ideas and things that may work better with nonverbal children include fidgets and squeezable toys. While waiting for food, offer gum or bring a bag of something light they can nosh on until the food comes (baby carrots work for us).
PARENTAL SUPPORT
Visuals are your friend A therapist made me a key ring with laminated index cards to take out with us to prompt/remind my son of what he should be doing. Here are some examples of what the cards read: Wait Please, Slow Down, Do Not Touch, Use Your Words, Please Stop, Take a Breath. You can customize what you think will work for your situation. The picture exchange communication system (PECS) can also be used if your child doesn’t read. Giving your child a written or visual schedule for the day can also be very helpful. Many children in general, but especially those on the spectrum, do better when they know what to expect. This is often used in school. It could be made of PECS with Velcro, or a simple whiteboard with a dry erase marker. You can also take pictures on your phone and print them. Piggy-backing on the last idea, you can use first this, then that. For example, you can say, “First you need to clean up this game, then we will open the next one,” or “First, we will go to the dry cleaner, then we will get ice cream.” Managing expectations is a great way to ease the stress of outings. You may notice I haven’t mentioned phones or iPads; I am not opposed to using a device for games or videos. YouTube has saved us many a time, but I try not to be too dependent on
them. Interaction and intellectual stimulation are essential for kids, and sometimes batteries die, or there’s no Wi-Fi. Every kid is different, and all strategies will work better for some than others. Having said that, give these ideas a real chance. It takes more than a time or two to see results when something is new. Hang in there until your kiddo understands what you expect, and you can really learn what their preferences are. Happy outings!
Diana Romeo is a proud, full-time, stay-athome 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 is also a mother to a sweet and dramafilled 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
THE VANGUARD SCHOOL Guided Learning through Individualized Spectrums of Growth Leadership
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LEARNING STRATEGIES
You’re Doing Great! Ways to Reward Positive Behavior By William Killion, PhD, BCBA COMPLETING SOME BASIC DAILY FUNCTIONS AND TASKS CAN BE CHALLENGING FOR CHILDREN WITH AUTISM. SOMETIMES JUST THE MENTION OF A SPECIFIC TASK CAN TRIGGER A NEGATIVE BEHAVIOR OR TANTRUM. USING REWARD SYSTEMS FOR COMPLETING EVEN SEEMINGLY SIMPLE TASKS CAN HELP MOTIVATE CHILDREN AND REINFORCE POSITIVE BEHAVIOR.
T
he first step in establishing a reward system is determining what motivates your child and what you are comfortable using as a reward. Take your cues from what your child enjoys doing during free time. Are they playing with toys? Swinging on a swing set? Enjoying screen time? Rewarding your child with extra time doing a favorite activity will be a good motivator for accomplishing daily tasks.
reward should be something you both agreed upon before beginning the tasks for the day. The danger of not rewarding them immediately after can lead to inconsistent behavior in your child because they are confused as to what action is being rewarded right then. What can help ensure the immediacy of the reward is to have the treat or toy right beside you, so as soon as the child completes the action, you can hand them the reinforcer.
One of the most critical aspects of rewarding positive behavior is immediacy. As soon as your child completes the required task, reinforce this behavior with the reward. The
Remember each child is different and will be at different stages in their development. Take it one day at a time, and you will see gradual progress.
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LEARNING STRATEGIES
Types of rewards Below is a simple and non-exhaustive list of some rewards your child may enjoy: • Coloring • Favorite toy • Food or treats (candy, pretzel sticks, peppermint, peanut, chewing gum, etc.) • Pat on the back, high five, or a hug (usually in younger children) • Playing outside (swing set, sandbox, grass, climbing a tree, etc.) • Playing with a family pet • Reading • TV or video game time • Verbal praise—this should always be included in the reward, but your child may need more than just verbal praise to reinforce their behavior
Different ways of rewarding Remember, different systems work for different children. Do not feel guilty for changing reward systems if your child does not seem to be responding to your reward. Every child learns and develops differently, which means there are several ways to enhance their learning along the way. Below are examples of various methods of using a reward system.
• Goals should be achievable. You may ask your child to complete a task they are simply not ready for yet, and that’s okay. Each child is different, and each child learns and grows at different paces. You may need to ask your child to complete a task a few times before adjusting the goals appropriately. • Make it visually interesting. Be creative in making the chart visually appealing to the child. Make the visuals age-appropriate. Using pictures and colors will help stimulate their mind and keep them focused while looking at the chart. 2. THE TOKEN ECONOMY REWARD SYSTEM • Earn a token. Your child can earn a token and place it on a board to show progress. Use symbols or shapes, candy, or pictures on a magnet as tokens and a piece of paper, decorated poster board, or a whiteboard to collect them. • Get a reward. Once your child has earned the designated number of tokens, they can get the agreed-upon reward.
1. THE BEHAVIOR CHART Sit down with your child and clearly explain the purpose of the chart before using it.
3. THE CHECKLIST • This system is similar to the behavior chart but will most likely look more like a simple text document.
• Set a goal ahead of time to determine what your child can earn if they complete all the tasks.
• A checklist allows for a simple and visual way for the child to see what tasks need to be done every day to receive the reward.
• Check the box. Knowing ahead of time how many boxes you want your child to complete to receive the reward will help the process run smoothly. • Stay consistent in wording. If you switch up the phrasing of a task, your child will most likely become confused and irritated. • Listen and learn. What does your child like to play with? They may not want an extra half hour of TV time and instead would like to play with trucks. Know ahead of time what your child enjoys doing in their free time. The activity they enjoy may change quickly, so stay observant.
• Be sure to include the reward at the bottom of the page so the child can visually see what they are working toward. • In this system, you can include small rewards after each task or chore is completed and a larger reward for completing the full list of tasks.
Remember to use immediate reinforcement No matter what type of reward system you use, remember to use immediate reinforcement as much as possible. You may
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need to change methods to get the most effective result from your child. Once you choose the system that works best for your family, stay consistent. This will help your child become comfortable with the process, anticipate upcoming tasks, and make progress more rapidly. Know ahead of time what reinforcers cause the best results in your child. Having a negative response can have just as much impact on the child as a positive one. Remember to take each day as it comes, sometimes hour by hour. Some days are more difficult than others. Chart results along the way so you can see your child’s progress towards long-term goals.
REFERENCES https://autismeducators.com/behavior-reward-systemsforstudents-with-autism https://www.youtube.com/watch?v=vmI7agAVAVs https://www.youtube.com/watch?v=7pN6ydLE4EQ (discrete training) https://www.autismspeaks.org/tool-kit-excerpt/helpful-strategiespromote-positive-behavior https://www.autismparentingmagazine.com/boost-behavioralchange/ https://www.youtube.com/watch?v=vmI7agAVAVs&t=5s https://www.youtube.com/watch?v=yymNMoSILDw
William Killion, PhD, BCBA, is a Board Certified Behavior Analyst, Speech and Language Pathologist at Springbrook Autism Behavioral Health in Travelers Rest, SC., with 40-plus years of direct experience with individuals with developmental disabilities, including autism. After receiving his BS in Speech Pathology with a minor in Psychology, Dr. Killion went on to attain an MEd in Special Education and a PhD in Developmental Psychology. He previously ran a private practice for Applied Behavior Analysis that serviced many areas of the state. He has served as adjunct psychology professor and consultant to psychiatric and behavioral facilities for behavioral plans for children and adults with autism and other developmental disabilities. He is the author of the Functional Independence Skills Handbook or F.I.S.H. Developmental Program, a curriculum for ABA used in 83 countries and translated into many languages. Dr. Killion is a frequent national speaker on ABA and how to address significant negative behaviors. Website: https://springbrookautismbehavioral.com/
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BEHAVIORAL HEALTH
Why is My Child
Engaging in Self-Injury? By Fady Beshara, MSc, BCBA MANY CHILDREN WITH AUTISM ENGAGE IN SELF-INJURIOUS BEHAVIORS (SIBS). AS A PARENT, YOU MIGHT SEE THIS AND IMMEDIATELY REACT, WHICH MAY BE THE RIGHT DECISION AT THE TIME. HOWEVER, IT IS CRUCIAL AS A PARENT TO UNDERSTAND WHY YOUR CHILD IS ENGAGING IN THIS DANGEROUS BEHAVIOR. THIS ARTICLE WILL EXPLORE THE FOUR DIFFERENT FUNCTIONS OF BEHAVIOR RELATED TO SIBS AND DISCUSS THE IMPORTANCE OF A TREATMENT PLAN DEVELOPED BY A BOARD-CERTIFIED BEHAVIOR ANALYST (BCBA).
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he first function we will explore is attention. As humans, we have an intrinsic need for attention; a child with autism is no different. An attention-maintained behavior is one that is dependent on another individual. For example, Jesse begins to bite his arm. Mom runs at him and starts to hug him while also asking if he’s okay. In this situation, Jesse learned if he bites himself, he will receive attention from his mom. Each time he wants attention, he may now begin to bite his arm. Each time Mom runs to him, it increases the likelihood he will do it again. The second function is escape. Behaviors can be maintained by escape from demands, situations, activities, environments, etc. For example, Mom asks Jesse to put his cars away, so he begins to bite his arm. Mom responds right away and says,
“It’s okay, you can play for a few more minutes.” As you can see in this example, Mom gave Jesse what he wanted: escape from the demand she placed (putting away his cars). Once again, each time Mom lets Jesse escape, he is more likely to bite his hand to do so. The third function is access. Behaviors can be maintained by wanting to access things such as items, actions, activities, etc. For example, Jesse is sitting in the kitchen, and he starts to bite his arm. Mom once again runs to him and gives him a bar of chocolate. In this situation, Jesse is learning if he bites his arm, he will get what he wants. Finally, the fourth function is automatic reinforcement. Behaviors can be maintained internally. Meaning, the behavior itself serves as its own reinforcer as it is internally rewarding.
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Jesse bites his arm because it feels good to him. These behaviors can be the most challenging to identify as they are happening with no clear indication. One characteristic of this function is that it seems to occur at any time and maybe even at all times. Behaviors maintained by an automatic function (the feeling of biting his arm) are often the most dangerous as they can increase rapidly due to how quickly the reinforcement is delivered. Now we understand the function; let’s explore the steps you need to take to decrease and eliminate this behavior before the child gets hurt. The answer to this might be surprising, but don’t change anything you are doing until you contact a BCBA. This is important as it makes sure the BCBA can address the SIB function as it was established. However, you can help the BCBA by being prepared with some important information and data they may need. Prepare for the BCBA some antecedent, behavior, and consequence data (ABC data). ABC data is composed of what was happening before the behavior began (antecedent), what the behavior looks like (behavior), and what happened after the behavior occurred (consequence). It is important to note each section has specific information the BCBA will need to understand the behavior. For an antecedent, you want to include where and what the child was doing, who was there, and what were the others around them were doing. For example, at 3:30 pm, Jesse was sitting in front of the television in the living room on the main floor, watching Dora The Explorer. Mom was in the kitchen, cooking his favorite meal, lasagna. When describing the behavior, we must identify what the behavior looked like, where the SIB was, how long (if you have this information),
and the observable intensity. For example, Jesse bit the middle top of his left palm with force, leading to teeth marks. No blood was drawn. The consequence must include what the individuals in the environment did and what happened to the environment (if anything). In this case, Mom ran over to Jesse with a food table and his lasagna, then set it up in front of the television. As you can see, taking ABC data can yield a lot of valuable information. Jesse was watching TV while his mom was cooking his favorite meal. The moment he bit himself, she gave him food. Based on what we learned about functions, this seems like access. However, by collecting multiple days’ worth of data, the BCBA might find that the behavior has multiple functions or that it is happening all the time. What is important to remember is that being prepared for the BCBA can help them speed up the process. This does not mean they will not need to do their own assessments; this simply means they have more information to help them create a treatment plan. Also, keep an open mind. Even if you think it may be a specific function, the BCBA might find something different. Ask them why and how they got to those results. This will allow you and the BCBA to get on the same page and express all your worries and concerns. REFERENCES Cipani, E., & Schock, K. M. (2011). Functional behavioral assessment, diagnosis, and treatment: A complete system for education and mental health settings. New York, NY: Springer Publishing Company, LLC. Cooper, J. O., Heron, T. E., & Heward, W. L. (2007). Applied behavior analysis (2nd ed.). Upper Saddle River, NJ: Pearson.
Fady Beshara, MSc, BCBA, is the co-founder and Chief Clinical Officer of Endless Abilities, Inc. He is a passionate behavior therapist with experience working with children and youth with autism and other developmental disabilities. He received his master’s degree in Applied Behavior Analysis and Autism from The Sage Colleges. Fady currently works on developing programs to increase various skills for children with autism. In addition, he specializes in working on aggressive and self-injurious behaviors. Fady has spent his career working in many different environments, such as homes, centers, group homes, schools, and hospitals. His passion for working in this field has developed into a mission: ensuring all children with developmental disabilities receive the best treatment possible. Fady supports a collaborative approach. He believes it is important to work with all individuals involved in the child’s life, including parents, siblings, teachers, childcare workers, and beyond.
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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 3 | 67 ADVERTISEMENT
SKILLS FOR LIFE
Helping Our Special Needs Community Find Friends and Relationships By Joseph Pangaro, CPM, CSO, MOI AS OUR FAMILY MEMBERS AND FRIENDS ON THE SPECTRUM GO FROM BEING YOUNG CHILDREN TO YOUNG ADULTS, THEY WILL FACE MANY CHANGES AND CHALLENGES. ONE OF THOSE CHALLENGES IS FINDING OTHER PEOPLE THEY CAN HAVE IN THEIR LIVES AS FRIENDS AND PEOPLE WITH WHOM THEY CAN POTENTIALLY CREATE LONG-TERM RELATIONSHIPS. THE PHYSICAL AND EMOTIONAL CHANGES IN WHO WE ARE AS PEOPLE CAN BE DIFFICULT FOR ANY OF US, AND THAT INCLUDES FINDING COMPANIONSHIP OF ALL KINDS. ONE OF THESE MUCH SOUGHT-AFTER RELATIONSHIPS IS ROMANTIC LOVE, AND MANY MEMBERS OF OUR SPECIAL NEEDS COMMUNITY ARE NO DIFFERENT; THEY WANT TO FIND LOVE TOO.
I
know a 20-year-old family member on the spectrum who has recently expressed interest in finding a girlfriend. His expression of this desire is as natural for him as it was for me so many years ago.
While this desire is natural, we as parents and guardians, aunts and uncles, and other family members can be caught off guard by this change. We may be confused about how to proceed, how to ensure our loved ones on the spectrum find appropriate people to be in their lives, and that the relationships are healthy and appropriate. Sexuality is not an easy field for any of us to navigate; many of us are filled with uncertainty, curiosity, desire, and a need to connect to other people. When our kids are young, we can
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control the connections they make or made to them by other people almost completely. But when they get older, especially high functioning young adults, it’s harder to monitor. No matter how we feel or how concerned we are for their safety, our kids still want to expand their circle and find friends and people they can love. So how can we help them and ensure they are safe? As anyone who has ever taken part in the realm of interpersonal relationships knows, connections with others can be fraught with joy, pain, and, on occasion, legal consequences for our actions. Guiding a young person on the spectrum as they explore their growing feelings in this world can seem overwhelming, even too difficult to attempt. But because it’s hard for us, does that mean our young people can or will just ignore these feelings and growing changes in their lives? I believe this is something we must consider no matter how it makes us feel. I have asked quite a few people about this as I have tried to understand how I can help the young man in our family, who is on this road as we speak. I have tried to discuss it with him, and he understands relationships are not easy and that emotional attachment can be a very powerful thing as well as a
SKILLS FOR LIFE
positive or destructive force in our lives. He is determined to move forward with or without guidance, so we are not sure of the best way to help.
because that was the perfect scenario. He didn’t want me or anyone else to go with him to feel like we were babysitting him, so we needed to figure out another way.
A good friend of mine, Matt Sobel, is also trying to help a family member find connections beyond his family—people with whom he can date and interact. Matt has done a lot of real-life research on how to accomplish these goals.
Pangaro: Did you discuss with this young man his understanding of personal relationships, the boundaries, and problems that can occur when you engage other people in relationships? Sobel: He is a high-functioning young adult in his mid-thirties with some learning disabilities, but he understands relationships and everything that comes with the territory. He ideally wants to have a family of his own. But getting to that step is the challenge. Everyone has to understand the uniqueness of the person they are trying to help and make sure they know the appropriate ways of interacting with other people.
I thought it would be helpful to ask Matt about how he has taken on this challenge and what he has found along this journey. Pangaro: Matt, how did you get involved with finding a way for young people on the spectrum to find friends and people they can interact with as friends, or even as romantic interests? Sobel: My brother-in-law is on the spectrum but is high functioning. He has a full-time job and drives to work every day on his own. As a family member and someone he looks up to, I made it something that I couldn’t fail in getting him to this next step in life. He has minimal friends from a prior employer, but since they don’t live in the area anymore, he really is involved with his hobbies, which are antique cars, classic cars, sports, and animals. I have always invited him to go places to get him out of the house. Pangaro: Finding connections to other people is hard enough; what did you think about helping a young person on the spectrum navigate these waters? Sobel: I knew it was going to be a challenge because even though I met my wife on a dating app, I knew that wasn’t the place for him. I needed to help him find new ways to have a conversation before getting him into the dating scene. In essence, I needed to think outside of the box. Pangaro: What were your concerns? Sobel: My concerns were how he was going to pivot when talking to someone about things he doesn’t like. I knew he would need to be coached. Several resources were going to be used, but we knew it wasn’t going to be easy or happen right away. Pangaro: Did you use any guideposts or set up parameters to help you guide the young man? Sobel: Unfortunately, it was trial and error, but he was okay going for the ride! First, we started with meetup groups to learn to have a conversation and just talk. We first got him involved with an animal group that involved riding horses. But we quickly found out that you weren’t talking to other people once you were on the horse, and everyone made their own groups. Next, we arranged through the social network Meetup to have him go to a bowling night, pre-COVID-19, just to enjoy the camaraderie and the company of other people. But, because he doesn’t feel comfortable just walking up to random people to create conversations, he didn’t feel it was worth his time. That worried me
Pangaro: What would you tell someone else trying to help a person on the spectrum about the pitfalls of dating or engaging in intimate activities with another person? Sobel: Unfortunately, there is nothing out there that is ideal for this situation. But addressing it with different people such as a therapist, their family, or even the friends they do have, are valid options. You will do whatever it takes to make them happy. So that was our goal, and we are still experiencing the challenges, but we know there has to be a solution somewhere. Pangaro: Are there any groups that provide ways for people to connect? Sobel: Look into Meetup for any groups within their hobbies or even a group event that allows them to be their own person. Think of it as a networking group. You want them to know how to talk to someone before looking into dating. Pangaro: If you were to advise anyone else on how to help a young person on the spectrum find people to connect with, what would you tell them? Sobel: Do your research and see what works for your family. Not everything I mentioned may work for you, but it worked for us. Pangaro: How can you decipher between a good quality group and one that is not so good? Sobel: Research is key. Use good judgment. If it’s too good to be true, it probably is. Pangaro: As a final question, what do you think would happen if we just put this topic off because it’s hard and didn’t try to help our young people on the spectrum? Sobel: Love and friendships are a beautiful thing, but some people need help getting there. In doing my own research, I found there are many websites and apps dedicated to our special needs communities and how to help them locate other people to meet, make friends with, and even date. But just because there are a lot of possibilities doesn’t mean every one of them is right or the best option.
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SKILLS FOR LIFE
To help the process, I think we need to do a few things:
if they don’t understand what the other person might be saying or meaning.
1. Get or conduct a very accurate assessment of the person we want to help. What are their interactive capabilities and understandings about relationships, sexuality, and appropriate boundaries when interacting with other people? This can help us guide them along this journey.
4. Do they understand the dangers they face dealing with people they meet online, through a service, or as a result of a referral? We might want to help, but not everyone does. Some people will take advantage of inexperience or naivety. Clearly explaining danger signs and how to react to inappropriate situations can prevent abuse or injury, physical and otherwise.
2. What kind of interaction are they looking for? My nephew was clear: he wants a girlfriend, but others might simply want a friend, someone to spend some time with. 3. Will their time be monitored or chaperoned? Will they meet on their own with others? Setting safety guidelines here is a good idea so they know they can ask questions
If we go into this with an open mind and a clear understanding of expectations, we can help our special needs children and friends find connections that can enhance their lives and bring enjoyment.
Lt. Joseph Pangaro, CPM, CSO, MOI, is a 27-year veteran law enforcement officer and school security director. Currently, he is the Chief Security Officer and Director of Global Training and Security Consulting for True Security Design. Lt. Pangaro is an award-winning columnist, author, and public speaker on all things safety and security. True Security Design offers Threat Assessments and training for schools, law enforcement, religious facilities, and summer camps. He has a nephew he loves who is on the spectrum, and his efforts to protect that community are personal. Email: JPangaro@TrueSecurityDesign.com
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70 | Exceptional Needs Today | Issue 3
TODAY
BEHAVIORAL HEALTH
Your Child is Having a Neuro-Crash
What It Is, How to Spot It, and Ways to Prevent It By Raun K. Kaufman IF YOUR CHILD OR SOMEONE YOU LOVE ON THE AUTISM SPECTRUM HAD AN ENTIRE ASPECT OF THEIR EXISTENCE PEOPLE WEREN’T SEEING, WOULD YOU WANT TO KNOW ABOUT IT? WHAT IF KNOWING ABOUT IT COULD UNLOCK—AND UNRAVEL—THE MOST CHALLENGING OF YOUR LOVED ONE’S BEHAVIORS, REACTIONS, AND CRISES? WELCOME TO THE WORLD OF NEURO-CRASHES.
W
hat is a Neuro-Crash? It’s what happens when the imposed situation overwhelms your child or adult’s brain, so their coping mechanism shuts down. (We’ll get into why I use the term “imposed situation” in a bit.) You’ve probably had your own version of a Neuro-Crash at some point (many points?) in your life. Have you ever felt so completely overloaded and overwhelmed you just couldn’t take it anymore? Have you ever unexpectedly shut down, burst into tears, or lashed out at someone? These are signs of
a brain that has reached its boiling point. A brain that has hit a wall. A brain that has simply had enough. And guess what? Almost every instance of an extreme behavior or reaction on your child’s part is due to them having a Neuro-Crash. In fact, undiagnosed Neuro-Crashes lead to escalating, ongoing crises in the home and school. Understanding what causes Neuro-Crashes is the only way to prevent them. However, there is an elephant in the room blocking our ability to do this.
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BEHAVIORAL HEALTH
The myth: The issue is your child
4. Sensory overload
There is a pervasive misconception that your child or adult (their autism, their behavior) is the problem. I know it can seem that way to someone looking in from the outside (hint: we’re all looking in from the outside), but that is not what’s actually occurring.
5. Unpredictability (we often act in unpredictable ways, don’t we?)
If your child were to start coughing, would you scold them or try to stop the coughing “behavior”? Of course not. Because you know the coughing is the symptom. The cause might be smoke in the air, or it could be an illness. Naturally, you’d then go about addressing that cause so you could help your child. If your child were in a very hot room, and they were shouting to be let out, you would never blame your child for shouting. You’d let them out. But, when it comes to extreme behaviors and reactions of children and adults on the autism spectrum, we’ve been taught to blame the person who is being burned instead of the fire, the person who is covering their ears instead of the siren, the person who is scratching their skin instead of the poison ivy surrounding them.
7. Bio-Storms (when something is introduced to a child or adult’s extra sensitive system—a food item, a chemical, etc.—that causes a temporary but powerful physiological reaction)
What do all of these analogies have in common? They are all situations in which the person’s reaction isn’t the problem; it’s the signal of the problem. We are often encouraged to stamp out the symptom, rather than understand and address the underlying issue. This leads us to focus on the effect instead of the cause.
Solving the real problem
Hitting, yelling, having a meltdown, swearing, inconsolable crying, expressing high anxiety, exhibiting extreme behaviors—these are what’s happening on the outside. On the inside…is a Neuro-Crash. Your loved one’s brain has reached critical overload, and the less extreme things they would normally do to cope and process (stimming, putting their hands over their ears, withdrawing, making certain sounds or movements, doing something that’s comforting/enjoyable) are no longer working, or are being actively thwarted by us. So, rather than attacking our loved one’s cries for help, what if we could circumvent the very factors driving them over the edge in the first place? If we want to disarm the triggers setting our kids and adults off, we have to know what they are.
The seven causes of Neuro-Crashes are… 1. Being around an adult/parent/caregiver/educator who is agitated 2. Being pushed (particularly when a “No” is not respected or when they are being rushed) 3. Invasion of personal space (being too close, hugging them, picking them up, moving them, or taking their stuff without their permission)
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6. Unclear boundaries (we may change rules, make exceptions, etc.)
Remember the term “imposed situation” from earlier? That refers to the environments or conditions our children or adults are exposed to—usually beyond their choosing. These seven items constitute imposed situations that make it difficult or impossible for our loved ones to function. Your child is not the problem. The imposed situation is the problem. Only by correctly diagnosing the problem can we solve it. And if we solve the problem, the signal and symptoms disappear.
My colleague, Kate C. Wilde, and I developed five Crisis Turnaround Tools to precisely address these root causes of Neuro-Crashes. While they are comprised of many layers (Kate and I teach a course that spends two hours on each of them), there are steps and approaches you can begin taking right now: • Step 1: Start practicing a skill we call “Socioception,” which is the ability to detect your loved one’s stress signals. Become a detective and hone your observational skills. Look for signs your child or adult’s stress levels are rising. Are they saying “No” a lot? Are their facial muscles tightening? Are they moving away from you? Are they pushing you away? If they are more verbal, is the pitch of their voice rising, or is the pace of their speech speeding up? • Step 2: Look for any opportunities you can to end or avoid control battles by giving your child more autonomy. Is it that important they sit at the table with everyone when they eat? Is it crucial they wear the blue shirt you picked out and not the red one they love? If there is something problematic they keep getting into (eating all the ice cream in the freezer, for instance), can you avoid that battle by not buying it at all? Every control battle avoided is a Neuro-Crash averted. • Step 3: Our loved ones on the spectrum are highly sensitive to our emotional state and level of agitation. Do whatever you have to do to show calmness. If you are agitated—whether it’s because you’re frustrated with what your child is doing or upset about something else—that
BEHAVIORAL HEALTH
will trigger an escalation in your child or adult’s emotional agitation, and that’s a fast-track to a Neuro-Crash. • Step 4: There are myriad factors outside our direct relationship with our children and adults on the spectrum that can nevertheless trigger Neuro-Crashes. Today, let’s just take a baby step. Can you make your home environment less intrusive from a sensory standpoint? Is there background noise (lots of people talking, music not chosen by your child, someone talking loudly on the phone, a TV on in the living room, etc.) you can eliminate or tone down? What you might call making your home more “boring” might actually be, to your loved one, making your home more welcoming, comforting, and low stress. • Step 5: What can get overlooked in our efforts to sidestep Neuro-Crashes are the positive moves we can make. Creating fun, enjoyable moments with our loved ones on the spectrum is key. Playing a game they love, giving them a deep pressure massage, showing interest in their interests, and showing appreciation and celebration can act as a kind of inoculation against Neuro-Crashes by building trust and acclimating their brain to a state other than fight-or-flight survival mode.
A special connection I’ve been where your loved one is, so I know what they are capable of if approached in a way that goes with their specialness, not against it. As a child, I was diagnosed with severe autism. I had no language and was completely enveloped in my own world. My parents were told I had an IQ below 30 and would need to be permanently institutionalized when I got older. My parents turned their backs on those prognoses. To help me, they created The Son-Rise Program® and worked with me one-on-one for over three years. Their work enabled me to blossom into a very social, highly communicative boy and conquer my challenges.
Rather than trying to force me to conform to a world I did not yet understand, they joined me in my world first. Instead of stamping out my so-called symptoms, they sought to address what was going on underneath. So, my own life is a testament to the value of listening to the person’s signals, looking for root causes, seeking to understand, and creating a universe in which people on the spectrum are embraced. That’s a world where, no matter where they’re starting from, your loved one can thrive.
Raun K. Kaufman is the author of the book Autism Breakthrough: The Groundbreaking Method That Has Helped Families All Over the World and the former CEO of the Autism Treatment Center of America®. An international lecturer and graduate of Brown University with a degree in Biomedical Ethics, Raun has completed lecture tours in the United States, United Kingdom, Ireland, the Netherlands, Belgium, Sweden, Norway, Spain, Portugal, Poland, Romania, France, Japan, Singapore, the Philippines, Malaysia, and Vietnam. He has written articles featured in journals such as The Autism File and Good Autism Practice, books such as Silver Linings and Cutting-Edge Therapies for Autism, and has been interviewed by media such as National Public Radio, BBC Television, Fox News Channel, The London Telegraph, and People Magazine. In addition to his work with families and educators over the past 22 years, Raun brings a distinctive qualification to the realm of autism treatment: his own personal history. As a child, Raun was diagnosed with severe autism and recommended for lifelong institutionalization. Instead, his parents developed The Son-Rise Program®, which enabled their son to conquer his challenges. His story was recounted in the best-selling book, Son-Rise: The Miracle Continues, and the award-winning NBC-TV movie, Son-Rise: A Miracle of Love. Website: www.RaunKKaufman.com
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Nature Notes
The Power of Play: 10 Learning Benefits of Outdoor Play During Distance Learning
By Caitlin Koob, OTR/L and Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA IN THIS ISSUE OF NATURE NOTES, I TURN THE REINS OVER TO CAITLIN KOOB, WHO IS CURRENTLY PURSUING A PHD IN APPLIED HEALTH RESEARCH AND EVALUATION AT CLEMSON UNIVERSITY. CAITLIN HAS AMPLE EXPERIENCE WORKING WITH CHILDREN WITH DEVELOPMENTAL DISABILITIES AND ENJOYS WORKING WITH UNDERSERVED CHILDREN AND THEIR FAMILIES. —AMY WAGENFELD, PHD, OTR/L, SCEM, EDAC, FAOTA
T
he past year and a half have been challenging for all of us, and many will reflect on the 2020-2021 school year as a year of social distancing, extensive time spent at home, and the (sometimes dreaded) remote learning. Many parents spent hours each day trying to learn the teacher’s role aside from their typical workday and tirelessly worked with their children to prevent them from falling behind in school. However, good news prevails, as simply encouraging your child to play outside in nature can buffer these added stressors in our lives. Play is the work of the child and is one of the most important aspects of healthy child development. Playing outside has a wide range of well-researched benefits, and the time spent in nature is valuable for the parent as well. Your child might not need more time at a desk but more time outside to perform well in school. These 10 benefits, outlined below, explain how you can help nourish your child’s mind and body by simply prioritizing outdoor play!
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IMPROVES FOCUS AND ATTENTION Children who spend time playing outdoors during the school day, such as during recess, have been found to have longer periods of focus and attention when completing sub-
sequent classroom tasks. It can be hard for young children to sustain their attention in the classroom for long periods, and spending time in nature can replenish and refresh these brain mechanisms. Next time your child seems to be losing their focus on homework or a long, challenging school task, take a nature break and play outside!
2
IMPROVES MOOD Have you ever gone for a walk, spent time in the garden, or simply sat outside to feel less stressed? The same can be true for your child! Spending time playing outside can help your child feel less stressed and more balanced, which, in turn, leads to an improved mood1.
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IMPROVES STRENGTH AND ENDURANCE Whether it’s running through the backyard, climbing playground equipment, or playing various outdoor games, nature provides countless opportunities for your child to be physically active. These activities help improve your child’s strength and endurance, leading to an overall healthy lifestyle.
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NOURISHES SENSORY SYSTEMS The smell of fresh grass, the textures of leaves, the taste of fresh vegetables from the garden, swinging from a tire
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Amidst the uncertainties of the past several months, nature is a reliable resource. It can be a refuge in times of stress, inspiration in times of curiosity, refreshment in times of fatigue, and clarity in times of uncertainty.
swing, and the sounds of the birds singing. Nature offers immeasurable opportunities to enrich the sensory systems through sight, smell, touch, hearing, vestibular (balance and movement through space), proprioception (pressure to and through the body), and how we feel on the inside. As these systems are nourished, they become more developed, helping your child feel balanced and more capable of adapting to daily demands.
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DEVELOPS GREATER SELF-AWARENESS As your child begins to feel more secure, they will become more self-aware. In addition, children who play outside often have more opportunities to develop their reasoning and observation skills, such as observing peers from different perspectives of the playground or deciding if climbing a tree poses a threat to their safety. Greater self-awareness opens our world, allows us to develop healthy relationships, and helps us navigate safely through our physical environments.
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TEACHES PROBLEM-SOLVING AND EXECUTIVE FUNCTION SKILLS Executive function skills, including working memory, flexible thinking, self-control, and problem-solving, are crucial to a child’s development. These skills continue to evolve throughout childhood and adolescence and are the foundational skills for how we function as adults. From planning the steps
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across an outdoor obstacle course to managing how to climb a play structure, executive function skills are subconsciously developed as children play outdoors. In addition, these skills are also known as a child’s resiliency skills. Playing outdoors to refine these skills will help your child develop a strong foundation to overcome challenges, such as the events of this past year or those that will take place in the future.
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TEACHES HEALTHY RISK-TAKING A classroom is great for learning in a structured environment, but children often learn to obey the rules of the class-
STAYING FIT AND HEALTHY
room and are not typically required to take risks. Playing outdoors in a safe space teaches a child to navigate their environment independently. Within certain boundaries, a child will develop greater self-confidence, reasoning skills, and independence to benefit them as they confront obstacles in their future.
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DEVELOPS SOCIAL SKILLS THROUGH A SAFE WAY TO PLAY WITH FRIENDS Just as it’s hard for us to be apart from our friends, it is likely difficult for your child! Children rely on play to develop age-appropriate social skills while fostering peer relationships. By playing with peers, your child will develop communication and social and emotional skills that cannot be learned when playing alone2. Playing outside (at a social distance) allows your child to continue developing these skills, have fun, and maintain a sense of normalcy amidst the restrictions of the COVID-19 pandemic. Whether it’s swinging on the swing set or drawing with chalk, your child will surely be excited to see their friends in person again!
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SPARKS AND CULTIVATES CREATIVITY Whether it’s assembling mud pies, making crafts out of materials found outdoors, or imagining navigating through a fantasy of scenarios, nature is an invaluable creative outlet for children2. Playing outdoors provides limitless opportunities for your child to nurture their creativity and practice thinking outside the box!
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ESTABLISHES AN APPRECIATION FOR NATURE THAT WILL LAST A LIFETIME The countless benefits of spending time in nature—including improved mood, less stress, more focus and attention, and greater self-awareness—are paralleled among adults. Therefore, teaching children to love and appreciate nature at an early age provides an opportunity to find comfort in a consistent source of solace—regardless of what is going on in the world around us. Amidst the uncertainties of the past several months, nature is a reliable resource. It can be a refuge in times of stress, inspiration in times of curiosity, refreshment in times of fatigue, and clarity in times of uncertainty. Spending time in nature is not only invaluable for you and your child’s mind and body, but it is a fun way to get outside and explore. If you can, try playing outside with your child for 20 minutes today and see what a difference it makes! REFERENCES Bagot, K. L., Allen, F. C., & Toukhsati, S. (2015). Perceived restorativeness of children’s school playground environments: Nature, playground features and play period experiences. Journal of Environmental Psychology, 41(2015), 1-9. 1
Caitlin Koob is currently pursuing a PhD in Applied Health Research and Evaluation at Clemson University. Caitlin has ample experience working with children with developmental disabilities and also enjoys working with underserved children and their families. 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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Acar, H. (2014). Learning environments for children in outdoor spaces. Procedia: Social and Behavioral Sciences, 141(2014), 846853. 2
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