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?
OUR COVER STORIES
RON SANDISON: A FORCE TO BE RECKONED WITH HOW TO BE YOUR OWN BEST ADVOCATE
An autistic self-advocate in the medical field explains how effective self-advocacy requires staying cool, calm, and collected.
MARRIAGE TOOLS FOR CAREGIVING PARENTS
Kristin Faith Evans, MA, MS, LMSW and Todd Evans, PhD, MA
Explore these tips and resources for maintaining healthy romantic relationships while raising children with disabilities.
THE FRIENDSHIP & DATING DUO HOW TO BUILD SOCIAL CONFIDENCE FOR FRIENDSHIP, DATING, AND MORE
Jeremy and Ilana Hamburgh
Confidence is a foundation on which relationships are built, so check out these tips for caregivers to help expand your exceptional loved one’s social life.
12 SHARING GIFTS: CELEBRATING STRENGTHS IN EARLY CHILDHOOD SETTINGS
Rose Adams, OTD, OTR/L
A special needs professional illustrates how observation, collaboration, and opportunity can nurture gift sharing within our environments.
20 RAISING A CHILD WITH SPECIAL NEEDS: MY DAUGHTER, JULIANN
Louisa Cambridge
A mother shares her story to inspire other exceptional parents facing similar challenges and circumstances.
32 THE BENEFITS OF MUSIC-RELATED SOCIAL STORIES
Miriam Edelman, MPA, MSSW
Discover how social stories can enhance the educational value of music and help prepare children for music lessons, performances, and concerts.
40 COMMUNICATION ALTERNATIVES FOR NONSPEAKERS
Keri Horon, BA
Explore the wonders and practical applications of the S2C™ communication model from the perspective of a mother with a non-speaking son.
54 AUTISM AND ANXIETY: PRACTICAL STRATEGIES FOR IDENTIFYING WARNING SIGNS AND WAYS TO SUPPORT
Amy Kelly, MBA, MNM
Coping with anxiety can be overwhelming for families with autism, but some strategies and interventions can be used to help reduce anxiety and its symptoms.
26 LIFE WITH ASPERGER’S MY TOP TIPS FOR LEARNING TO DRIVE WITH AN AUTISM DIAGNOSIS
Julie Day
An adult on the autism spectrum shares her journey learning to drive and offers tips for others seeking greater independence.
28 TAKING TIME TO BE A STUDENT: INVESTIGATING MOTIVATION UTILIZING ROLE REVERSAL
Jennifer McAvoy, MEd
An educator shares how student-teacher role reversal can be a valuable tool for understanding the exceptional pupil’s strengths and learning preferences.
30 NATURE NOTES WAYS TREES CAN PROVIDE CHILDREN WITH DEVELOPMENTAL SKILLS
Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA
Our nature columnist suggests learningfocused, movement-oriented, and sensoryrich ideas for you and your children to embrace the beauty of trees.
36 HELPFUL TOOLS FOR WHEN YOU’RE RAISING A SPECIAL NEEDS CHILD ALONE
Karen Kaplan, MS
A special needs consultant provides advice and support for single parents of children with unique learning requirements.
44 NEUROINFLAMMATION: THE HIDDEN KEY BEHIND AUTISM AND ADHD SYMPTOMS?
Daniela Minardi Pèret Marciano, MSc
An overview of potential connections between brain inflammation and learning difficulties, emotional dysregulation, behavioral changes, and brain function.
48 ALL THINGS OT
THE ENERGY METER: A CONCEPT FOR COMMUNICATING EMOTIONS
Laura Ryan, OT, OTR, OTD
Discover how utilizing an Energy Meter from Autism Level UP can help your child manage their fluctuating emotions.
52 EVERY CHILD WITH A LABEL OF DISABILITY IS A CHILD TO BE CHERISHED
Gary Shulman, MS Ed
An author shares the heartwarming lessons he learned from a child with exceptional needs, emphasizing that every child with a disability is deserving of love and care.
58 SAFETY GOALS WITH NICOLE THE IMPORTANCE OF TRAUMAINFORMED THERAPISTS FOR INDIVIDUALS WITH DISABILITIES
Nicole Moehring
A look at the importance of working with trauma-informed therapists for individuals with disabilities who have experienced abuse.
60 KEEPING YOUR CHILD WITH AUTISM SAFE AT SCHOOL DURING AN EMERGENCY
Dr. Ronald I. Malcolm, EdD
Discover some simple tips that could aid in keeping children with autism safe at school during an emergency.
A writer shares a poem that offers a unique insight into parenting a child with exceptional needs.
66 UNDERSTANDING BODYFOCUSED REPETITIVE BEHAVIORS: WHAT PARENTS NEED TO KNOW
Jan Stewart
Body-Focused Repetitive Behaviors (BFRBs) are among the most misunderstood mental health disorders. Here are some practical, science-based insights for caregivers.
70 KATE MAKES IT GREAT YOUR INCOGNITO EXCEPTIONAL PARENTING QUESTIONS ANSWERED
Kate C. Wilde
Our resident advice columnist responds to your questions, providing assistance for a child who chews inedible items, a child exhibiting a spitting stim, and a child who cries without a clear cause.
74 EXCEPTIONAL ADVICE FROM MESHELL ESTABLISHING BOUNDARIES FOR AN EXCEPTIONAL TEEN ENTERING THE DATING SCENE
Meshell Baylor, MHS
Support for caregivers to assist exceptional loved ones in practicing safety skills when entering the dating scene.
66 EDUCATION THROUGH MUSIC: TEACHING MUSIC AND GEOMETRY TO STUDENTS WITH AUTISM AT ELEMENTARY PUBLIC SCHOOLS. PART 2
Aygul Hecht, BS, PhD
A teacher outlines a key aspect of her lesson plans for autistic learners in an elementary public school: the students’ emotional responses to music.
82 FINANCIAL FOCUS PROPERLY GIFTING TO INDIVIDUALS WITH DISABILITIES FOR A LIFETIME OF SUPPORT
Ryan F. Platt, MBA, ChFC, ChSNC, CFBS
Learn how to give gifts to a person with a disability without negatively affecting their current or future government benefits.
Exceptional Needs
Our mission is to educate, support, and energize families, caregivers, educators, and professionals while preparing all families for a healthy future.
exceptionalneedstoday.com
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Amy KD Tobik, BA
Lone Heron Publishing, LLC
Magazine Staff
Editor-in-Chief: Amy KD Tobik, BA
Copy Editor: Emily Ansell Elfer, BA
Digital Marketing Coordinator
& Social Media: Dione Sabella, MS
Graphic Designer: Annie Rutherford, BA IT & Digital Solutions Specialist: Jared Cochran
Professional Consultants
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Dr. Stephanie C. Holmes, BCCC J. Edwards Holt
Dr. Ronald I. Malcolm, EdD
Ryan F. Platt, MBA, ChFC, ChSNC, CFBS Ron Sandison, M Div
re you a parent supporting your child, an educator assisting a student, or a doctor caring for a patient? Perhaps you have a diagnosis of your own and have been striving for awareness, acceptance, and inclusion. If so, you are a vital advocate empowering our community. Together, we fight to ensure that every person's voice is heard.
I’ve known Ron Sandison, M. Div., professionally for over a decade and have proudly witnessed his progression from a full-time psychiatric care specialist to a professor of Theology at Destiny School of Ministry. Ron is an outstanding speaker, the author of several books, and the founder of Spectrum Inclusion, which empowers young adults with autism to achieve independence and employment through mentoring and autism events. Now married with a young daughter, Ron is a passionate self-advocate. To discover essential ways to advocate for accommodations, read his article “Ron Sandison: A Force to Be Reckoned With | How to Be Your Own Best Special Needs Advocate.” He shares personal stories and discusses how to build four bridges for advocacy.
Meanwhile, columnist Nicole Moehring has a daughter and son who have been diagnosed with autism and Fragile X Syndrome. Tragically, both children are victims of sexual abuse. As a parent, Nicole tirelessly advocates through her non-profit, Voices of Change, to reduce the risk of abuse, neglect, and exploitation of children with disabilities. Be sure to read her article, “Finding a Trauma-Informed Therapist for Individuals with Disabilities,” to learn how seeking a professional who understands trauma and is sensitive to the complexities of disability can significantly enhance the healing process.
According to Amy Kelly, MBA, MNM, approximately 40% of autistic individuals will receive an anxiety diagnosis at some point in their lives, compared to 15% of those without autism. Anxiety is among the most prevalent co-occurring mental health conditions in both children and adults with autism. In addition to serving as the
National Director of Family Engagement at Devereux Advanced Behavioral Health, Amy is a mother to a daughter diagnosed with moderate to severe autism, verbal apraxia, intellectual and developmental disabilities, and generalized anxiety disorder. Amy is a passionate advocate who shares risks and effective coping strategies in her piece, “Autism and Anxiety: Strategies for Identifying Warning Signs and Ways to Support.” With forethought, determination, and resilience, Amy emphasizes that you and your loved one can transform challenging moments of anxiety into opportunities for growth.
This issue contains guidance on building social confidence for friendship and dating, establishing boundaries for teens entering the dating scene, and helpful tools for raising a child with special needs alone. Among the articles is a valuable piece that offers marriage tools for caregiving parents, an article explaining the benefits of music-related social stories for autistic children, and communication alternatives for nonspeakers.
We always appreciate our contributors, advertisers, and subscribers who support and play a vital role in our awardwinning magazine. Together, let's advocate for awareness, acceptance, and inclusion.
Author Kate Swenson of Finding Cooper’s Voice , Adrian Wood of Tales of an Educated Debutante , and Carrie Cariello of What Color is Monday ?
Ron Sandison A Force to
Be Reckoned With How to Be Your Own Best Special Needs Advocate
By Ron Sandison, M Div
Learning to advocate for accommodations enabled me to be successful in academics, speaking events, and the workplace. From an early age, I had to advocate for my needs. When I was a freshman in high school, I advocated to my algebra teacher so that I could eat a peanut butter sandwich each day in her class. The peanut butter sandwich gave me protein and energy to stay focused and not be disruptive.
In my senior year of high school, I was three months past the age requirement to compete in high school athletics in the state of Michigan because I repeated kindergarten due to autism. My mom and I advocated with an attorney for my right to compete in track and cross-country in the federal district courts. My case, Sandison vs MHSAA, became a precedent-setting case for the Americans with Disabilities Act (ADA) and helps other people with disabilities and autism to compete in sports. By competing on the track and cross-country team, I received an athletic scholarship to attend college.
In my junior year of college, my mom and I advocated to Michigan Rehabilitation Services (MRS) to supply me with a computer. MRS provided me with a new computer to help me with my academics. Twenty years later, I presented at MRS’s National Disability Employment Awareness Month job fair, sharing my insight on employment.
A formal autism diagnosis is important for accommodation in school and the workplace and for applying for Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI). Under the Americans with Disabilities Act (ADA), a diagnosis is required to request reasonable accommodations for employment or other benefits.
A diagnosis can help you understand how your brain processes information and the accommodations you need to reach your full potential. For adults with autism, a diagnosis enables them to do a life review and understand why employment and relationships have been a challenge. My diagnosis helped my family, friends, and coworkers
understand my struggles in the workplace and the reason for my unfiltered comments and jokes.
When advocating for accommodation, you should share your diagnosis, the reason you need it, how it can help you, and the benefits of providing it. During my master's degree program, I requested and received extended time for my biblical Greek tests. I shared with my professor of Greek my diagnosis of autism, how autism affects me, and my need for extended time due to test anxiety and sensory issues.
Example
Here are four things to share when requesting accommodations for extended test time:
1. Your request: I need extended time on the tests.
2. Your diagnosis: I have autism, and it causes me to experience severe test anxiety, leading to sensory overload, which causes my mind to go blank and forget the answers to the questions.
3. Reason you need the accommodation: Extended time on tests helps me stay calm and focused on the assignment and do my best. When I have a time restraint, I become anxious and hyper-focused on the sounds and sights around me.
4. Benefits of the accommodation: When I have extended time, I perform my best on the test and need less help learning the material in the classroom.
The Three C’s of a Cat
Effective self-advocating requires the three C’s of a cat: remain cool, calm, and collected. Staying cool can be extremely difficult when you feel your rights are violated or overwhelmed by a new company policy. A screaming tantrum or meltdown will hinder you from receiving accommodations and could get you fired or arrested. Even after years of self-advocating, I still lose my cool at times and become frustrated. Some things that cause me anxiety and make me lose my cool are a change in routine, new company policies, sensory overload, unpredictable circumstances, short notice for a deadline, or when a coworker stabs me in the back.
The first C of a cat is to remain cool. I have learned the key to remaining cool is negotiation. This enables me to stay in control of the situation and not become angry. When I need accommodation, I negotiate to make it a win-win situation for both the person I am negotiating with and me. Staying cool requires you to delay your gut reaction of frustration and pulse to regain your composure before responding. Take three deep breaths before responding. Staying cool helps prevent a sensory overload that leads to a meltdown.
The second C of a cat is to stay calm. When advocating, ask yourself: Should I be worried and upset about this? How will this new policy or routine affect my life? Hating change, we often blow things out of proportion and tend to think the worst. I have learned to stay calm by talking with my coworkers and family. My coworkers reminded me that I was able to adjust to other changes in the workplace in the past and I should go with the flow and remain calm.
The final C of a cat is to be collected. You can be collected by typing a letter with the accommodation you need. The four things you need to share in an accommodation letter are your diagnosis, the reason you need the accommodation, how the accommodation can help you, and the benefits of providing the accommodation. Also, include positive words for the person or company for which you’re making the request. For example, if you’re advocating to your company state, “I really enjoy working here and all the help you have provided me in the past.”
Watch The Three C’s of a Cat Advocate Video
Building a platform for advocacy
I have learned to build four bridges for advocacy. First, I build a bridge of trust. I create trust with integrity; my words and actions are congruent. When I advocate for accommodation, I need it so I can do my best in the workplace or academics. For example, during COVID-19, my company mandated
that the nursing staff work overtime. Being mandated by a supervisor causes me severe anxiety. In response to the new policy, I self-advocated by having a professor of autism write a letter requesting accommodation for my autism under the Americans with Disabilities Act (ADA). I made it a win-win situation for my supervisors by agreeing to work extra hours each week when I was available.
Second, I built a bridge of communication by using the three C’s of a Cat, which are mentioned above. Staying cool, calm, and collected helps people be more willing to give you the accommodation you need and help you in the future. I communicate my needs to my coworkers and supervisors and explain why I have those needs due to my disabilities.
Third, I build a bridge of connections. The more connections you build, the easier it is to advocate for change. In Michigan a few snowflakes is an inconvenience causing you to put on your winter jacket and gloves. Four feet of snow composed of millions of snowflakes will stop traffic and give you a day off school. Connections can empower us to change policies, laws, and receive accommodations. We can build connections by having people join our cause.
Finally, I will build a bridge for global impact. We can create a platform for global impact with a large social media following and as an influencer. In a noisy world with marketers, big corporations, and lobbyists, our voice might feel hoarse and like we have little ability to bring change. Building a social platform can give us a voice in a noisy world and make it easier to request accommodations. Three ways to build a platform: podcasts, speaking events/ conferences, and blogs/articles.
You might choose to host a podcast and share your experiences with autism or your disability and interview other people on the spectrum and well-known individuals in the community. A podcast helps you develop social connections leading to new opportunities and speaking events.
Speaking events can include autism conferences, companies, and religious services. When you speak at a conference, make connections with other people attending the event and receive their contact information. Create a
speaking contact list; include in this list: the date of the event, place or name of the event, address, contact person, email, and topic of your message. After a speaking event ask the host to write you an endorsement and send a thank you card. Use these endorsements to promote your speaking events and help you receive more invitations to present. Make sure to ask your contact for people they would recommend you contact for speaking events, add them to your list, and contact them.
Blogs/articles are also a great way to share your journey and help others on the spectrum or with disabilities by providing practical advice. I write articles for the Art of Autism, Exceptional Needs Today, and Autism Parenting Magazine. For my articles, I interview inspiring individuals with autism or disabilities and their families and write articles on topics related to living with autism.
Summing up
Learning to advocate has empowered me to succeed in academics and a career in the medical field. As we remain cool, calm, and collected, people and companies are more likely to grant our requests. We advocate by building the four bridges of trust, communication, connections, and a global platform on social media. Connections enable us to be agents of change for the disability and autism community and fierce advocates, a force to be reckoned with.
Ron Sandison, MDiv., works full-time in the medical field and is a Professor of Theology at Destiny School of Ministry. He is an advisory board member of the Autism Society Faith Initiative of the Autism Society of America, the Art of Autism, and the Els Center of Excellence. Ron holds a Master of Divinity from Oral Roberts University and is the author of A Parent’s Guide to Autism: Practical Advice. Biblical Wisdom was published by Siloam, and it is about Thought, Choice, and Action. He has memorized over 15,000 Scriptures, including 22 complete books of the New Testament. Ron speaks at over 70 events a year, including 20-plus education conferences. Ron and his wife, Kristen, reside in Rochester Hills, MI, with their daughter, Makayla. �� spectruminclusion.com SQUARE-FACEBOOK facebook.com/SpectrumRonSandison ✉ sandison456@hotmail.com
Watch the Building the Four Bridges of Advocacy Video
Sharing Gifts: Celebrating Strengths in Early Childhood Settings
By Rose Adams, OTD, OTR/L
How do you feel when you receive an unexpected gift? How do you feel when you share a gift with someone else? Chances are you share a smile and feel great about either receiving or giving a gift. As a school-based occupational therapist, I have participated in gift-sharing experiences where children are encouraged to share their strengths (gifts) and are celebrated for doing so! Sharing is one of my favorite experiences as an early childhood practitioner.
In this article, gifts will refer to individual strengths that are recognized, shared, and celebrated within an early childhood classroom setting.
Backstory
Earlier this year, while working in a preschool setting, I got to participate in the gift-sharing experience. The classroom teachers led the students to discuss traditions and things their families do or might celebrate around the holidays. The students brought in things from home and had an opportunity to share something about themselves, the item, or their traditions. I appreciated how inclusive this classroom setting was. They asked me if I had anything to share. As it happened to be one of the teachers’ birthdays, I shared that I like to sing my rendition of the happy birthday song for people who have touched my heart in any way. I then asked permission to share. Of course, permission was granted, and all eyes and smiles were on me. I sang my rendition of "Happy Birthday,” and the students and teachers were surprised and celebrated my gift. The feeling was mutual. I sing from the heart so that others can feel my heart.
A few months later, I walked into that same classroom for a session. It was during morning meeting time. As I put my things away and washed my hands. I overheard a conversation about a student’s birthday that day. During the morning meeting discussion, the student who was
celebrating a birthday said to one of their classroom teachers, “Do you think Dr. Rose can sing for me?” My heart melted and I was honored to do so. I share this story because, had I not shared my gift with the class, no one would know, and the student would not have felt brave to ask me to share.
I appreciate and celebrate classrooms and other settings where a child’s individual strengths are supported, celebrated, and shared by classroom teachers. Recognizing and supporting individual strengths contributes to student well-being and academic success (Galloway et al., 2020; Quinlan et al., 2019). I often look for these positive expressions of strength-based approaches and encourage anyone who works with young children to do the same.
As we are navigating our way through the school year, I continue to witness moments of gift sharing. Children are recognizing and making note of each other’s strengths. This is what happens when the environment has been created to support these behaviors. When we model what we want to see, it happens when we aren’t there to see it. Teachers have such an important role in modeling and facilitating strength-based learning opportunities for children (Quinlan et al., 2019). However, this takes a collaborative approach between the students, parents, and school team (Adams, 2023; Quinlan et al., 2019).
How can you encourage gift sharing among the children with whom you work, live, or engage on a regular basis? How can we support their gifts and help to strengthen them? Sometimes discovering gifts may not always be easy to identify. Observation, collaboration, and opportunity are three ways that we can foster gift-sharing within our environments.
Observation
Observe the subtle signs and moments of joy. See what promotes or contributes to that unexpected smile or laugh. What activities does the child or student gravitate towards? What activities appear motivating? Answering some of these questions may help you discover strengths through observation. Consider observing children during their primary childhood occupation: play! When children play and participate in play experiences with their peers, they are provided with the space to share special moments where their strengths may be highlighted. In early childhood settings, play is often supported through set-up or classroom structure and materials that are available. Children are encouraged to have a voice through choosing items, materials, and stations of interest (Adams, 2022; Galloway et al., 2020).
Collaboration
Collaboration is key! You may have read that before if you’re following my pieces. Collaborate with the parents, guardians, siblings, teachers, and other individuals who regularly engage with the child. Through discussions and shared experiences, you might just discover some of those gifts. In my article, “Parents as Partners” published in Issue 12 of Exceptional Needs Today, I discuss the benefits of collaboration between the home and school teams and how this fosters a development of understanding (Adams, 2023). Galloway et al., (2020) emphasizes how collaboration among parents, teachers, and other persons helps to identify students’ strengths.
Opportunity
Discovery of strengths is also fostered through opportunity. Create experiences and opportunities for children to explore new things, work in different groups, and learn in different environments (Adams, 2022). Choice-based learning that supports students’ strengths and interests is another way to honor the student’s voice (Adams, 2022; Galloway et al., 2020). Creating opportunity promotes a sense of curiosity and contributes to the development of new interests that become gifts! How can you provide additional opportunities for children to develop strengths? Think about your own strengths. What types of opportunities have contributed to your growth and development?
Bringing it all together
Gifts are strengths! We all have gifts to share, express, and use. These gifts or strengths contribute to our well-being and success. Without the discovery of our gifts through observation and collaboration and the opportunity to express them, the world may never know the greatness that lies within. Let’s work together to create a world where all strengths are recognized, celebrated, and encouraged to grow. Start today by looking around and within. You might just find a beautiful gift to share.
References
Adams, R. (2022, July). Giving kids a voice: Promoting early self-advocacy among children with disabilities. Exceptional Needs Today, 9, 18-21. https://www.exceptionalneedstoday.com/
Adams, R. (2023, March). Parents as partners: Promoting collaboration between home and school. Exceptional Needs Today, 12, 10-13. https:// www.exceptionalneedstoday.com/
Galloway, R., Reynolds, B., & Williamson, J. (2020). Strengths-based teaching and learning approaches for children: Perceptions and practices. Journal of Pedagogical Research, 4(1), 31-45. https://doi. org/10.33902/JPR.2020058178
Quinlan, D., Vella-Brodrick, D.A., Gray, A., & Swain, N. (2019). Teachers matter: Student outcomes following a strengths intervention are mediated by teacher strengths spotting. Journal of Happiness Studies, 20, 2507–2523. https://doi.org/10.1007/s10902-018-0051-7
Resources
Link to Quinlan et al. (2019) full text article: https://www.researchgate. net/publication/329172692_Teachers_Matter_Student_Outcomes_ Following_a_Strengths_Intervention_are_Mediated_by_Teacher_ Strengths_Spotting
Rose Adams, OTD, OTR/L, is an occupational therapy practitioner with a clinical focus in pediatrics. She works with children and families of children on the autism spectrum, multiple disabilities, and other neurodiverse needs. Dr. Adams has worked in schools, private practice settings, and community-based programs. She is the executive director at Changing Lives Occupational Therapy, P.C., and currently works as a consultant for a local school district in New York. Dr. Adams is a graduate of Boston University’s Post Professional Occupational Therapy Doctorate (PP-OTD) program. Her doctoral project focused on using song-based interventions to support young children with autism and related disabilities participating in school-based occupations. When she is not working, she enjoys writing, baking, singing, and sharing time exploring the outdoors with her school-aged twin boys.
By Kristin Faith Evans, MA, MS, LMSW and Todd Evans, PhD, MA
Raising a child with disabilities allows us to view ourselves from new and inspiring perspectives. However, the added stresses, chronic grief, and feelings of isolation can weigh heavily on us, affecting every aspect of our lives. One area of family life that these additional stresses can adversely affect is our marriage relationships.
Learning additional skills
When our daughter with complex medical and developmental needs was young, we discovered the hard way that parents caring for children with disabilities need
additional coping and marriage tools to thrive. But these skills aren’t complicated and can be easy to learn and use. Here are four practical and research-backed marriage tools to strengthen your marriage.
1. Accept that your spouse’s experience is different from yours
Though you are both caring for your child with additional needs, you are likely experiencing this journey differently. You also approach your situation from unique life experiences (and possibly a history of trauma) and varying coping skills. You may perform different aspects of caring for your child—primary caregiving, coordinating services and
specialist appointments, providing for the family financially, and advocating.
These different roles can provoke strong emotions. For example, missing a commission or promotion at work might cause you to feel like you are failing your family as a provider, or a bad report from a doctor could make you question all your hard work in caring for your child. These experiences and emotions may be personal, but they can greatly shape your relationship.
The desire to understand
It may be challenging to understand your spouse’s grief process or mental or emotional struggles. Yet, seeking to understand your spouse’s problems and feelings will help you grow closer together and strengthen your bond. Though you may not fully comprehend your spouse’s perspective, practice communicating that you want to better understand how they feel and that you love and accept them.
Try this: Ask your spouse how they are really doing and one way you can better support them.
2. Live in the present moment together
Painful emotions, challenging behaviors, and stressful circumstances can make it appealing to check out and become emotionally numb mentally. Our minds can also tend to worry about the future and stress about our never-ending to-do lists. This increases anxiety and ramps up our bodies’ stress response systems. It can become difficult to connect with our spouses when we are in a state of chronic stress.
The power of mindfulness
Mindfulness practice has proven effective for improving caregiving parents’ quality of life and marriages. Mindfulness is basically living in the present moment, fully participating in one thing at a time, and observing what is happening inside and around you without judging as good or bad. Practicing mindfulness can help lower stress levels and improve mental, spiritual, emotional, and physical health. Being fully present with your spouse can help deepen your intimacy and lower the intensity of your negative emotions. Mindful parenting can improve your children’s health, development, and behaviors, reducing overall stress and improving your marriage.
Try this: Pause with your spouse and hold hands for 30 seconds. Take two slow, deep breaths together. Now, simply observe each other. Notice what your spouse is wearing, their facial features, how they smell, and how their hand feels. How fast are they breathing? What emotional expressions do you see? You can briefly talk
about your observations or continue with your day. These intentional pauses can cultivate a habit of being fully present with one another.
3. De-stress together
A recent report from the Surgeon General reveals that 48% of parents feel so overwhelmed daily that they have difficulty functioning. Now, calculate in the findings that caregiving parents face significantly increased stress levels compared to the typical parent, and the life challenges caregiving couples face are often more serious than the average couple’s.
One in three disabled parents develop a mental health disorder. At a given time, one or both of you may be experiencing anxiety, depression, or post-traumatic stress disorder. If you are feeling overwhelmed, you are in the majority of disability parents!
One of the most critical steps we, as caregiving parents, can take to become healthier and more effective spouses, caregivers, and advocates for our children is managing our stress levels healthily.
Try one of these:
• Watch a sitcom together while holding hands.
• Tell each other a joke.
• Take a walk around the block.
• Hug for 30 seconds while taking deep breaths together. These small moments together will help break the stress cycle and create more joy in your relationship.
4. Prioritize your marriage
Caregiving parents have more to discuss, more intense issues to resolve, and less time to talk. The marriage relationship can easily and naturally fall to the bottom of the triage list—until your marriage becomes an urgent concern.
Daily check in
Growing closer requires intentionality and resolve to set a regular daily time to focus on your marriage. Protect this time to only care for one another, not discuss your child. These 10 minutes a day will build trust, closeness, and strengthen your relationship.
Try this: Agree on a set daily time to check in with one another and focus on your relationship. This might be in the morning, at lunch time, early afternoon, or after your child is in bed. Commit to pausing to talk every day. To get started, ask, “What was one high point and one low point of the last 24 hours for you?”
In the long run, the healthier your marriage is, the healthier and happier you, your spouse, your child, and your family will be. We encourage you to pick one of these skills and put it into practice today.
References
Johnson, J., & Piercy, F.P. (2017, October). Exploring partner intimacy among couples raising children on the autism spectrum: A grounded theory investigation. Journal of Marital and Family Therapy, 43(4), 644661. https://doi.org/10.1111/jmft.12247.
McConnell, D., & Savage, A. (2015, June). Stress and resilience among families caring for children with intellectual disability: Expanding the research agenda. Current Developmental Disorders Reports, 2, 100-109. https://doi.org/10.1007/s40474-015-0040-z.
Negash, S., Nalbone, D. P., Wetchler, J. L., Woods, S., & Fontaine, K. L. (2015). Intimacy in the midst of caregiving: Examining relationship and sexual satisfaction of parents raising children with special needs. Journal of Family Psychotherapy, 26(3), 190–209. https://doi.org/10.1080/0897535 3.2015.1067532
Office of the Surgeon General (OSG). (2024). Parents under pressure: The U.S. Surgeon General’s advisory on the mental health & well-being of parents [Internet]. Washington (DC): US Department of Health and Human Services (US). 1, The current state of parental tress & well-being. Available from: https://www.ncbi.nlm.nih.gov/books/NBK606662/.
Raffaele Mendez, L. M., Berkman, K., Lam, G. Y. H., & Dawkins, C. (2019). Fostering resilience among couples coparenting a young child with autism: An evaluation of together we are stronger. The American Journal of Family Therapy, 47(3), 165–182. https://doi.org/10.1080/01926187.201 9.1624225
Ramisch, J.L., Onaga, E., & Oh, S.M. (2014, August). Keeping a sound marriage: How couples with children with autism spectrum disorders maintain their marriages. Journal of Child and Family Studies, 23, 975–988. https://doi.org/10.1007/s10826-013-9753-y.
Scherer, N., Verhey, I., & Kuper, H. (2019). Depression and anxiety in parents of children with intellectual and developmental disabilities: A systematic review and meta-analysis. PLoS One, 14(7) :e0219888. https:// doi.org/10.1371/journal.pone.0219888
Singh, N. N., Lancioni, G. E., Medvedev, O. N., Hwang, Y. S., Myers, R. E., & Townshend, K. (2020). Using mindfulness to improve quality of life in caregivers of individuals with intellectual disabilities and autism spectrum disorder. International Journal of Developmental Disabilities, 66(5), 370–380. https://doi.org/10.1080/20473869.2020.1827211.
Kristin Faith Evans, MA, MS, LMSW, and Todd Evans, PhD, MA, are celebrating 23 years of marriage. They are award-winning authors, national speakers, and special needs parents. They are passionate about empowering other parents of children with additional needs with the keys to thrive at www.DisabilityParenting.com. They both earned their MA in Christian Educational Ministries at Wheaton College in Illinois and have served together in full-time ministry in church, camping, and retreat settings. Todd received his PhD from Vanderbilt University’s School of Engineering and currently manages his own business, and Kristin earned her MSW from the University of Tennessee and is a Licensed Master Social Worker experienced in couples, child and family, substance abuse, and crisis counseling. They enjoy traveling and the outdoors together.
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Raising a Child with Special Needs: My Daughter, Juliann
By Louisa Cambridge
Reflecting on the journey, I see a trail riddled with potholes, fear, courage, laughter, struggle, perseverance, wonder, compassion, and mostly love.
My hope in sharing my story about raising my daughter Juliann is to encourage parents facing similar circumstances and offer family members and friends insight into some of the personal aspects these parents might be facing.
My story
My journey began with a complicated pregnancy, which resulted in my lengthy hospitalization and the subsequent premature birth of Juliann. As she grew into a toddler, I knew her physical development was delayed compared to my other children. Just before she turned one, the diagnosis came: cerebral palsy.
In an instant, my life changed forever. I had crossed a line into a territory I didn’t understand and didn’t want to understand. Because Juliann was so young, there was no way to determine the extent of her limitations. She was simply a little bundle of mystery and the love of my heart.
Overwhelmed, I envisioned myself standing at the foot of a mountain, staring up at the top. I had no choice but to climb to the summit, but I questioned my abilities. Furthermore, I was afraid. Conflicting emotions riddled me with guilt and shame. I loved my daughter with all of my heart but absolutely did not want to have a child with cerebral palsy. The latter was a dark secret I kept hidden for decades. The worst part was how isolated and lonely I felt. When I tried to open up with friends and family, they, too, became overwhelmed, so I internalized my feelings.
Years ago, a counselor told me that feelings are only feelings! They are neither good nor bad; how you act upon your feelings matters. You are not a bad person or parent
because of how you feel about your child. And if you’re just beginning your journey down this road called special needs, whether it’s physical, emotional, attention deficit disorder (ADD), dyslexia, or autism, and can’t see the light at the end of the tunnel, I’m here to tell you that light is there!
As Juliann grew from a baby into a toddler, she needed to purchase special equipment. Many of these purchases sent me into a cycle of emotions, which I’ve since learned is the same cycle associated with grief and loss: Denial— Isolation—Anger—Depression—Acceptance. Whether it was the need for standers used to stretch her hamstring muscles, wheelchairs, walkers, or my particular nemesis, a van with a wheelchair lift, I went through this cycle.
For most of her childhood, Juliann wore braces wrapped around her feet and legs. We had to have new pairs made often to accompany her growth. When she was 12, I supported her decision not to wear them anymore. At 15, she was tired of the multiple doctor appointments, tests, and weekly occupational and physical therapy sessions, so I ended those too.
Caring for Juliann exposed an unsavory trait in me that was a great shock. I never considered myself socially prejudiced, but the moment the word “handicapped” was attached to my life, that was a different story. Unfortunately, I could share countless stories where single-minded people saw only the wheelchair, not the potential of the person sitting in it. Luckily, many kindhearted people, mostly healthcare workers, countered the unkind.
By the time Juliann was 20, we had reached the mountain's summit. Reflecting on the journey, I see a trail riddled with potholes, fear, courage, laughter, struggle, perseverance,
wonder, compassion, and mostly love. The unknown is now known, and in the process, it changed my family into kinder, more compassionate people.
My encouragement for other parents
I strongly urge parents who have kids with exceptional needs to seek out a support group. There are wonderful online organizations that help caregivers facing difficult situations. I urge you to join one. There’s nothing better than connecting with people who are living similar lives.
Also, I can’t stress enough the importance of finding respite. I encourage you to take an overnight break with your significant other if you can. Don’t talk about the kids or stresses in your life. I realize this is difficult in today’s fast-paced world. One simple way that worked for me was training my kids to understand that when I said, “Mommy
needs quiet time,” they stopped talking. It was amazing how those simple moments of silence helped me.
Most importantly, remember yourself you are doing the best you can, with the abilities and tools you possess. That’s all any of us can do, really, our best.
The following is a list of support groups for parents or anyone who is a caretaker:
The Caregiver Action Network www.caregiveraction.org
Parent to Parent
www.p2pusa.org
Daily Strength
www.dailystrength.org
Louisa Cambridge has raised, worked with, and adopted children struggling with special needs such as physical disabilities, autism, and learning differences, as well as children who have been emotionally and physically abused. Her experiences also include working as a wildlife rehabilitator, raising animals to be released back into the wild to live their best lives. She lives with her family, in Fort Worth, Texas.
THE FRIENDSHIP & DATING DUO How to Build Social Confidence for Friendship, Dating, and More
By Jeremy and Ilana Hamburgh
Sitting home alone can be a terrible feeling. Sitting alone at a bar can be a terrible feeling. Standing alone at a social event can be a terrible feeling. This is why Ilana and I love being friendship and dating coaches: We help wonderful people take steps towards a social life that fills them with joy.
Building confidence plays a massive role in that. It isn’t a neurodivergent thing; it’s a human thing. Confidence is one of the most significant factors in whether a person approaches someone new, engages with them, navigates the conversation with them, and ultimately sparks a meaningful connection. Confidence makes meeting new people easier and, frankly, more enjoyable.
The opposite is also true: When a person’s self-confidence is low and self-doubt is high, being out into the social world can feel overwhelming. Being overwhelmed tends to make someone shrink inwards, bringing more feelings of isolation and frustration. It’s like a negative cycle. As a parent or professional, understanding how to help someone you love build their confidence can pave the way for better social experiences and all the beautiful things that come with it. So, let’s talk about confidence…
Lacking confidence can have consequences
Low self-confidence can affect people in many ways, but let’s focus on two areas: before and during social gatherings.
A neurodivergent adult who doubts themself is quite likely to feel stuck. They may have lost the enthusiasm and drive to find social opportunities, get ready for them, and go to them. After all, if you don’t feel like you can win, why try at all?
Even if they go to a social gathering, lacking confidence can have a huge impact on what happens while they’re there. Maybe they hang out by themselves, letting their anxiety win out. Maybe they try to meet someone new, but there’s no spark of connection. Maybe they’re “in their own head” with fear of being judged, rejected, misunderstood, or unappreciated. Any of those things can make a neurodivergent adult feel worse about themselves, which drains their confidence even more.
What can you do about it?
Take off the pressure
One strategy we use with our clients is taking some of that social pressure off them. We don’t want our clients going into social spaces feeling like they’ve failed if they haven’t clicked with someone there. So, we encourage them to start joining a community that meets locally and on a regular basis. We call it a “tribe.” But more than that, we want them to give themselves permission to spend the first few gatherings getting oriented and acclimated.
That’s such a different way of thinking! There’s a huge difference between walking into a gathering with pressure
Confidence is one of the most significant factors in whether a person approaches someone new, engages with them, navigates the conversation with them, and ultimately sparks a meaningful connection.
to meet people there, as opposed to just looking and learning. How much pressure does that take off?
Feeling comfortable physically being within a group can be a big part of building confidence because everyone feels more at ease when they’re in familiar surroundings. From there, they can work on small steps towards connecting with new people. Even then, the interactions can gradually build. Socializing doesn’t need to be all or nothing!
Plan ahead for who you want to meet
One of our clients joked that there should be a “drinking game” where everyone takes a drink each time Ilana and I talk about the importance of being prepared. (Please don’t!)
There’s a reason though: Preparation reduces uncertainty, and reducing uncertainty builds confidence.
One helpful strategy is planning ahead of time who they’re going to meet and how. Are they going to talk to the organizer and ask for introductions? Will they pick a table with space and ask to join? Are they going to pick out someone whose style matches yours?
Different social spaces have different ways to get involved. If they aren’t prepared for how they want to get involved,
stepping into a chaotic room can flood them with anxiety. By the same token, walking into a room with a sense of purpose allows them to focus on executing their strategy, and that can be a nice confidence boost.
Have a “Mental Library” ready
But what will they say to the person they meet? Great question! That’s where building a “Mental Library” comes in. If you’ve read our other columns, you’ve heard us preach about this before.
Walking into a room filled with people has a special way of making our minds race. That’s not usually a good recipe for being the coolest, calmest, best version of yourself. But a Mental Library can help.
A Mental Library is a set of great questions, answers, and stories that a person prepares beforehand. Like a library of books, it allows the person to “check out” the question, answer, or story they need when needed. There can be something calming about knowing that they’ve written and practiced interesting snippets of conversation that they can rely on when the time comes.
Role-playing with them can help, too. We actually have mock conversations and mock dates with many of our clients, and we record them so our clients can see what they look and sound like from the other person’s perspective. It’s a little trick we learned from our previous careers as lawyers and special education teachers.
Start building the foundations for confidence
Ultimately, having social strategies is important, but they’re only useful if someone has the confidence to go out into the world and use them. That’s why confidence is often the foundation for friendships and relationships. As a parent or professional, you can have an outsized impact by encouraging the person you love to take those next steps, even if they’re a little scary. You’re also welcome to connect with us to continue the conversation. Who knows, maybe we’ll even get to work together on it!
Jeremy and Ilana Hamburgh are friendship and dating coaches who teach the strategies and skills that empower autistic and neurodivergent adults to find community, make friends, start dating, and build relationships. Ilana has over 16 years of experience as a special education teacher in New York City and is now the Director of Education for My Best Social Life. Jeremy has over 13 years of experience coaching autistic and neurodivergent adults on building the social lives they want and deserve. Jeremy and Ilana’s passion is their first-of-its-kind strategy and skills program, called Social Life 360. It’s an innovative program that teaches their autistic and neurodivergent clients the strategies and skills to confidently meet new people in new places, and they do it by decoding the social world using formulas, diagrams, and step-by-step processes that make more sense to a differently wired brain. The Social Life 360 program also provides clients with a warm, inclusive and exciting community that makes them feel embraced on their social journey. You can learn more about Jeremy, Ilana, and the Social Life 360 approach at MyBestSocialLife. com, and you can contact them about scheduling your family’s Strategy Session at Jeremy@MyBestSocialLife.com
LIFE WITH ASPERGERS
My Top Tips for Learning to Drive with an Autism Diagnosis
By Julie Day
My brother passed his driving test at 17 years old. I passed mine when I was 27. Why? I didn't really have the incentive to learn at the time. I took the train to work, so I didn't need a car for that. It wasn't until the end of 1997, when I had two small nephews, that I found the incentive. I wanted to visit them, taking my parents with me, and not having to rely on my brother to come visit us.
Here is my journey on learning to drive, with tips shared along the way.
I had been shopping independently when I came across a well-known driving school in the UK. I decided to book lessons for the new year right then and there. I opted for automatic lessons instead of manual, and I was glad I did. My brother drives a manual vehicle, which requires a lot of coordination with the gear stick and clutch. At that time, I was still working, so I could afford the lessons. If you want to learn and find the cost too high, maybe a family member can teach you? For me, learning with a driving school was the only option available.
If you book lessons with a school, asking what you will be doing in the first lesson might be a good idea. I don't know if it's the same in other countries, but the instructor was meant to teach me all the road signs and markings from a booklet. However, my first instructor didn't. I found this out after being told I had failed a mock test when I drove up a road with a “no entry” sign. If I had been taught it, I would have known what it meant and not gone that way. Following this, I got a phone call from the school to say I was getting a new instructor as my one had left.
One good tip is to focus entirely on what you are doing and ensure you don't zone out. I remember in one early lesson, for a few seconds, my mind went elsewhere, and in those seconds, my driving went awry as I didn't have control of the wheel. The instructor had to take the wheel from me to stop me from going up the pavement (sidewalk)!
The second instructor was friendly and taught me from the booklet. He taught me many of the maneuvers needed for a test. After a while, he said he felt he had gone as far as he could with teaching me. A third instructor taught me what to expect when I took the test. We practiced a few times before I took my first one in 1998.
Side note: If you must wear glasses for driving like I do, wear them. You can get ones with a reflector on to help when driving in the sun or when the roads are wet and shiny. Also, it might differ in other countries, but when you have a driving test, you are asked to read a license plate from a distance.
I failed my first test. This was mainly due to having the test in an adapted car for disabled customers. I accidentally knocked the small indicator switch, setting off the lights and making a noise. I can't remember why I failed the second test, but I did. The third one, I had to reverse park up a hilly road and hit the curb. Not realizing it was that, I reversed more and ended up on the pavement! Fail. After that, we practiced reversing a lot. So, when I took the test a fourth time, I did it correctly and finally passed. Having driven in a Vauxhall Corsa for all my lessons, I chose that car when I bought one.
I then took an advanced driving course, which included driving on motorways (highways), in the rain, and through London. If you can afford an advanced course of lessons, do take one. Seeing me drive gave my mum the impetus to learn too, and help me out, and she passed her test (first time) in 1999. It was that year that we went on holiday by car, and being able to take turns driving proved useful.
I also drove to see my nephews, and Mum drove home. In 2005, I ended up being the main driver when Mum broke her wrist. She couldn't drive for several weeks, and by the time she was able to again, she had lost confidence.
I sold my car in 2016. I had become very aware of how I drove, especially after I was diagnosed with Asperger's syndrome and compared to all the other drivers around me. It put me off. By then, my car was nearly 18 years old and kept getting major faults, which was costing me. I hadn't been using it too much anyway, only to the local shopping areas and back.
Being on my own now, I won't drive again. Having my mum with me gave me the confidence to do it. It helped me to
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have someone else's eyes in the car with me. I don't think I'd pass any tests if I wanted to drive again. There is so much more to learn, and it’s become more expensive. Like some things in my life, driving was one thing that I needed at that time. It gave me some independence then. I am happy that I learnt to drive.
So, if you do want to learn to drive, here are my top tips:
1. Be genuinely motivated to learn, such as driving to work or seeing relatives.
2. Think about affordability. Can you afford lessons and the general upkeep of a car, including insurance?
3. If you don't have a trusted relative to teach you, choose a reputable school to help you learn.
4. Find out what you will be learning in each lesson.
5. Do you want to go automatic or manual? What is best for you?
6. Always focus on your driving when behind the wheel.
7. Enjoy the independence.
Julie Day lives in South East London, UK. She writes magical realism fiction for adults and children, and her children's books feature autistic characters. She has also published her memoir Endocarditis – My Journey' About Coping With This Rare Serious Infection And Its Recovery. She also writes short stories in anthologies and fillers for magazines. She blogs about her life with Asperger’s and her memoir.
julieaday.blogspot.com
@juliednomo
Taking Time to Be a Student: Investigating Motivation Utilizing Role Reversal
By Jennifer McAvoy, MEd
Asa support provider to a young man with autism, I found myself questioning how to increase motivation as well as evaluate the tools that I was commonly relying on when offering support.
At the time, I was providing in-home habilitation services to a young man whom we will call Robert for this article. Robert was approximately 11 years old, and we had worked together for six years. I noticed that Robert seemed to shy away from working on tasks related to skill acquisition. What Robert wanted was video games and hotdogs. He was generally happy if he could have a hot dog and a galactic battle. The main problem was that video games did not provide the learning opportunities that Robert would benefit most from, although the reinforcement value of this
activity was high.
Personally, I am terrible at video games. A basic Mario Kart race would often be delayed as I launched myself off Rainbow Road into the abyss for the 100th time, causing Robert genuine frustration as he maneuvered the treacherous road with the accuracy and ease of a professional gamer. My lack of video game skills left me with an interesting idea. An idea that serves as the purpose of this article. I turned the tables and asked Robert to teach me how to play Mario Kart, to promote Robert to lead teacher while I assumed the role of learner. As I pitched my idea to Robert, I clarified that he would be the teacher and that it was his expertise that I wanted to benefit from. I noticed the change in Robert’s demeanor when I introduced this
idea, most likely due to the focus on video games and the opportunity to “steer the ship.” I could see the ideas brewing and was hopeful that I had not signed up for Mario Kart Boot Camp, Extreme Edition.
What came out of this idea was amazing. Robert took his role very seriously. He broke down concepts, identified goals, and even assigned homework. Yes, I had to practice my race maneuvers at home, going over the lessons Robert had developed in order to teach me Mario Kart fundamentals. This investigation succeeded because it focused on how Robert engaged me in lessons. I noticed he used a lot of praise and verbal encouragement. He never tried to impose punitive consequences for a mistake. Instead, he offered reassurance and modified the lesson to promote success. I was over the moon excited to see that Robert had created a process centered on positive reinforcement. I began to understand that the dynamic we had created was one that was genuinely supportive. He wanted to see me be successful. But as an 11-year-old boy, he was a bit cutthroat, too, which I found out during the final exam!
The final exam was quite the event. The technology at the time meant that the Nintendo Wii was the main attraction, which allowed online racing. Robert gathered his peers and prepared to show this novice racer how the professionals do it. My husband and I logged into the race from our home, surprised to see other racers preparing to join the game. As the race started, we quickly became aware that our talents were lacking compared to this tween group of professional Mario Kart racers. We lost in a big way.
Robert was kind, reassuring, and, most of all, fair. I passed my Mario Kart prep class, even after my dramatic loss to a tween Mario Kart gang. Robert highlighted all my successes and offered me genuine praise for the progress I had made. I learned that what Robert really valued was feeling successful and receiving positive acknowledgement. We both learned a tremendous amount from our role reversal. It helped me to understand how Robert perceived learning and what was most important to him when working towards identified goals. Robert needed a cheerleader, and Mario Kart taught me to be a better one.
Robert and I have partnered in a learning journey for over 20 years. It is to his credit that I have sought and obtained my current level of expertise. While Robert was only temporarily
assigned the role of teacher, he remained my guide for far longer. My sincere thanks to Robert for his patience and diligence in helping me identify and prioritize those things of true importance. Well, I am off to play Mario Kart now; I think I will race Rainbow Road.
Note:
It is important to note that evidence-based practice is the gold standard when designing an intervention to assist an individual with a diagnosis of autism or other documented barriers. It is this author’s wish to clarify that when working on strategy development, the resources utilized should rely heavily on researched and validated procedures. However, as we look to move the discipline forward, it is important to continually test new intervention strategies as well as have a solid method of modifying the strategies that are currently employed.
Jennifer McAvoy, MEd earned a Master’s Degree in Education from Arizona State University. She has also obtained a graduate level certificate in Positive Behavior Support from Northern Arizona University. She has spent more than 20 years working to support individuals with unique needs. She has worked as a classroom teacher, behavioral consultant, and clinical liaison. Currently Jennifer works to assist in the oversight of behavior treatment planning in her home state.
WAYS TREES CAN PROVIDE CHILDREN WITH DEVELOPMENTAL SKILLS
By Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA
My inspiration for writing about trees in this installment of Nature Notes is a bit organic. I am looking out my study window at a lovely tree I have watched for four seasons. Right now, the tree is bare of leaves, giving me a more direct view of the open space in my neighborhood. It feels a bit like the curtains are open, which, of course, they are!
So, let’s talk trees. According to the University of Michigan School for Environment and Sustainability (Go Blue!), there are about 73,000 species of trees on earth, which includes about 9,000 that have not yet been identified. Most of the trees that have not yet been identified are in South America's Amazon rainforest and Andean Mountains. Here is the URL for those who want to learn more about trees and share this information with your children
Trees can provide children with many developmental skills, and a sturdy wood tree trunk is a ready-made sensory bonanza for children to interact with lovingly and gently. My “tree-palooza” suggestions are below and include, in this order, learning, movement, and sensory-focused ideas for ways for you and your children to embrace trees.
• How many trees are in your yard or where you live? Count how many you see while out for a walk or a drive. Draw pictures of the trees.
• There are many tree shapes. What shapes do you see? Do they look round, like pyramids, like upside-down ice cream cones, like thin columns, or drapey?
• Just how tall is the tallest tree that you see? Take a guess!
• How many leaves does your favorite tree have right now? What colors are the leaves?
• How many conifers (trees that generally maintain their
leaves, like pines or firs) or deciduous trees (they shed their leaves in fall, like maples and oaks) are in your yard or neighborhood?
• If you discover a nurse log or stump while out in the forest, take the time to look at what is growing on it. A nurse log is a fallen tree trunk or part of a tree with plants growing on it. They are really amazing.
• How high can you raise your arms to touch the tree bark or a low-hanging branch?
• Bend down and touch or point to any visible tree roots. What do they look like? Are they smooth, twisted, or bumpy?
• Gather up a pile of fallen leaves. Roll over them or jump or stomp on the pile.
• If a strong and sturdy tree branch is in your yard, hang a swing. Tree gazing while swinging is the best.
• How high can you toss a leaf? How far can you toss it?
• Can you wrap your arms around the tree trunk? Hug it firmly, but take care not to squeeze too tightly! And
show it some love.
• Gather a supply of fallen tree debris, such as pinecones, large seedpods, and leaves. Dip the tree debris in shallow containers filled with tempera paint and create a masterpiece on large card stock or cardboard sheets.
• Run your hands and arms along the tree bark. Is it smooth, rough, scratchy, or what?
• Get up close to a tree and take a deep breath in. What do you smell?
• Do you hear the leaves rustling in the wind? What does it sound like?
• Sit or lie down beneath the canopy of a tree and just BE. Ahhhhh.
Trees rule and are celebrated widely! According to the website AFAR, there are eight tree festivals celebrated throughout the world. Check out the site. Maybe you will be inspired to invent your own family festival of trees and to show them that you care.
Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA, is Principal of Amy Wagenfeld | Design and Lecturer in the PostProfessional Occupational Therapy Doctoral Program at Boston University. She is a Fellow of the American Occupational Therapy Association and the Center for Health Systems and Design at Texas A&M University and holds evidencebased design accreditation and certification (EDAC) through the Center for Health Design, specialty certification in environmental modifications (SCEM) through the American Occupational Therapy Association, and certification in healthcare garden design through the Chicago Botanical Garden. Amy presents and publishes widely on topics relating to access to nature and is co-author of the award-winning book Therapeutic Gardens: Design for Healing Spaces, published by Timber Press. When not designing gardens, researching, or developing garden and nature programs, Amy can be found happily digging in the dirt. �� amywagenfelddesign.com �� workjournal.org/nurture-through-nature
The Benefits of Music-Related Social Stories
By Miriam Edelman, MPA, MSSW
Music can enhance communication, social skills, and emotions in autistic children while fostering lifelong interests and hobbies. One effective method to increase the benefits of music is by incorporating social stories, which can prepare autistic children for music lessons, performances, and concerts, leading to more enjoyable experiences.
Social stories are short stories with realistic pictures, which can be photographs or illustrations. They should have a goal, be well-researched, and use simple, positive language. They should also include descriptive and coaching sentences. Answers to who, what, where, why, when, and how should be included.
Social stories teach social norms, improve social skills, teach empathy and compassion, and decrease anxiety. Since the identification of social stories as a tool in the early 1990s, social stories have been popular among parents and others because they are inexpensive, accessible, and help parents
manage difficult behavior. These tools mainly assist young autistic children to learn by discussing the situation, what usually occurs, and expected behavior (Raising Children Network, 2024). Autistic teenagers and autistic adults generally do not use social stories; they are more regularly utilized for children.
Social stories are valuable only when their audience is interested in, understands, and can act on them. In addition, they should be personalized to the child and used at the correct time.
Social stories are flexible. They can be written in any tense (e.g., past, present, or future) (Raising Children Network, 2024), in different persons (first or third), and in multiple forms (e.g., print book or ebook). These stories can also be in color or black-and-white. However, since many autistic people are literal thinkers, social stories in color could be the most beneficial.
Social stories should have the following parts:
• Title
• An introduction page with the premise of the social story’s situation (i.e., a concert)
• Words
• Images
• Positive and affirming conclusion
The following should not happen when writing social stories:
• Include only directives
• Use second-person
• Utilize metaphors and complicated languages that many autistic people have difficulty comprehending
• Write a non-accurate story
• Include judgments or threats.
• Not have realistic and accurate graphics. (Rudy, 2024)
Mental health professionals, speech pathologists, and parents can enjoy the non-difficult activity of writing social stories (Raising Children Network, 2024). Parents writing their own social stories can make them much more personal than pre-made social stories. For example, they can include photographs of a relative’s home in a social story about going to that residence. If they are worried about writing their own social stories, they can view pre-existing social stories for inspiration.
Children can experience the story in various ways. They can read the story with an adult, have someone else read the story to them, or listen to a recording of the story by the child (Raising Children Network, 2024). People can also discuss and act out social stories.
Social stories and music: the benefits
Social stories can be extremely helpful in preparing autistic children for music lessons, performing, and attending concerts. Their benefits include easing nerves and decreasing many potential problems. Social stories can increase the likelihood of more productive lessons, better performances, and enjoyment of concerts. When children have more positive lessons and performances, they may be more likely to continue these activities and have increased self-confidence and a life-long hobby. They could also join orchestras, bands, and other music groups, expanding their networks and having the ability to perform at major events and venues.
Social stories about lessons, performing, and attending
concerts would have slightly different focuses. All of them may involve paying attention, focusing, and remaining still/somewhat still. However, social stories about performances could discuss not paying attention to the audience, being distracted by other activities in the room (such as people taking photographs and/or making videos), and being nervous.
Music for Autism (Music for Autism #1, n.d.) uses a social story in connection with their interactive in-person and virtual concerts for autistic individuals and their families. Professional musicians play in these concerts, which are free for the audience to attend (Music for Autism #2, n.d.). Music for Autism’s social story is on its website (Music for Autism #3, n.d.) and e-mailed to people registering for these concerts. Its social story, which is written in the first person, includes a cover page and then subsequent pages that include text and photographs. Music for Autism fosters a warm, accepting, and inclusive environment where children and their loved ones can conduct, dance, play musical instruments, and enjoy refreshments.
Social stories are easy and relatively inexpensive to create and can make musical activities more enjoyable for all involved.
References
Camilleri, Louis et al. “Autism Spectrum Disorder and Social Story Research: a Scoping Study of Published, Peer-Reviewed Literature Reviews.” Review Journal of Autism and Developmental Disorders, vol. 9, 24 February 2021, pp. 21-38. Springer Nature, https://doi.org/10.1007/s40489-020-00235-6
CST Academy. “The Transformative Power of Music: How CST Academy Uses Music to Support Children with Autism.” 2025, https://cstacademy.com/ resources/articles/the-transformative-power-of-music-how-cst-academyuses-music-to-support-children-with-autism/. Accessed 29 January 2025.
Gray, Carol. “What is a Social Story?” Carol Gray Social Stories, 2024, https://carolgraysocialstories.com/social-stories/what-is-it/. Accessed 26 December 2024.
“Music for Autism #1.” n.d., https://www.musicforautism.org/autism-andmusic/success-stories/. Accessed 31 December 2024.
“Music for Autism #2.”n.d., https://www.musicforautism.org/our-mission/. Accessed 31 December 2024.
“Music for Autism #3.” n.d. https://www.musicforautism.org/wp-content/ uploads/2014/07/m4a-social-story.pdf. Accessed 31 December 2024.
Rudy, Lisa Jo. “Social Stories for Kids With Autism: Social story examples help your child with daily life.” Verywellhealth, 2024, https://www. verywellhealth.com/social-stories-for-kids-with-autism-4176139. Accessed 26 December 2024.
“Social Stories.” Raising Children Network (Australia.), 2024, https://raisingchildren.net.au/autism/therapies-guide/socialstories#:~:text=Social%20stories%20were%20developed%20 to,typically%20happen%20in%20that%20setting. Accessed 20 December 2024.
Tobik, Amy. “Social Stories for Autistic Children – The Ultimate Guide.” Autism Parenting, 2024, https://www.autismparentingmagazine.com/socialstories-for-autistic-children/. Accessed 26 December 2024.
Meshell Baylor, MHS, is a mother of four children—two of whom are on the autism spectrum. She serves her community as a social worker and advocate in the Los Angeles area. She has a Bachelor’s degree in human services from Springfield College and a Master of Science degree in human and social services. Meshell continues volunteering and giving within her local area while serving the special needs community.
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�� Center for Autism and Developmental Disabilities
Miriam Edelman, MPA, MSSW, is a Washington, DC-based policy professional. Her experience includes policy work for both the Senate and House of Representatives. Miriam’s undergraduate degree is from Barnard College, Columbia University, with majors in political science and urban studies and a concentration in history. She has a master’s in public administration from Cornell University, where she was inducted into Pi Alpha Alpha, the national honorary society for public administration, and was awarded the Cornell-wide Distinguished Leadership Award. She also has a master’s of science in social work (focusing on policy) from Columbia University. She is a commissioner on the DC Commission on Persons with Disabilities. Miriam aims to continue her career in public service. She is especially interested in democracy, civic education, District of Columbia autonomy, diversity, health policy, women’s issues, and disabilities.
Helpful Tools for When You’re Raising a Special Needs Child Alone
By Karen Kaplan, MS
When you’re a single parent to a child with unique learning needs, the challenges of multiple therapeutic requirements, additional medical needs, potential sleep disturbances, and peculiar eating habits can seem insurmountable at times.
So many tasks and decisions must be undertaken alone as the sole caregiver, such as special education support, therapeutic interventions, and supportive childcare. How do you manage stress? How do you manage a day off? How can you manage the additional costs of raising a child with special needs?
While sometimes challenging, raising a child with special needs can be easier when you have the right tools and support. Here are a few suggestions that might prove helpful:
1. Create a schedule
A well-structured routine can be a powerful tool in reducing stress. When your child knows what to expect, they may experience fewer meltdowns, giving you more time to manage other aspects of your life. This can significantly reduce stress levels and make you feel more in control.
2. Empower yourself
Gaining a comprehensive understanding of the special education rights under the Individuals with Disabilities Education Act (IDEA) is vital. This knowledge will be invaluable in advocating for your child's needs. Similarly, learning about adult service supports can help you plan for your child's future.
3. Plan for the future
Educate yourself about adult service supports. Understanding these resources can help you plan for your child's future and ensure they receive the care they need as they transition into adulthood.
4. Find ways to connect
Connect with other single parents with special needs children. Talking with others who know what you are going through can help you feel more positive about your situation. These days, there are so many ways to connect with other parents. Try a web search for special needs support groups or even single-parent support groups. You can search within your preferred
social media outlet to find these groups. You may find some that are diagnosis-specific and some that are for the whole spectrum of disabilities. Many parents use social media to gather and support each other online. Again, there will be groups for all disabilities; some will be diagnosis-specific. No matter how you choose to find support, other parents can be one of your best resources. Groups may be a great way to share experiences with other parents, listen to theirs, and exchange important information and tips learned along the way.
5.
Seek counseling
Counseling may provide some relief. A professional therapist or counselor could offer an unbiased viewpoint, listen to your thoughts and worries, and help you get through things. Many programs provide counseling on a sliding scale, which can sometimes be covered by insurance.
6. Accept help
Allow yourself to accept help from family, friends, church, and neighbors. Many parents feel the need to “do it all,” and that can lead to severe stress, anxiety, and exhaustion. Let supportive grandparents be in your corner. Here are some grandparent resources:
• The Grandparent’s Guide to the Autistic Grandchild: Includes easy, inexpensive activities you can do to help your grandchild move toward independent adulthood.: Brown, C.B.: 9798389996861: Amazon. com: Books
• Understanding Your Special Needs Grandchild: A Grandparent's Guide: Jones PhD, Clare B.: 9781886941441: Amazon.com: Books
• (1) Post | LinkedIn (1) Post | LinkedIn
7. Encourage sibling relationships
If you have other children old enough to help, let them help. Siblings often assume the “helper” role, which is natural and beautiful. Special needs children can often require a lot of help, but be careful not to ask too much. Siblings need time for themselves, for friends, for activities, and time alone with you now and then. Look into sibling supports such as:
• Sibling Leadership Network | Siblings of people with disabilities
• The Center for Siblings of People with Disabilities (siblingcenter.org)
• Friendship Circle / Resources
No matter how you choose to find support, other parents can be one of your best resources.
8. Research assistance programs
Find assistance from your local social service agencies if you need housing, food, healthcare, or childcare assistance. Sometimes, things are tough when there is only one income in the household, and you may struggle to meet all your needs. Many agencies have assistance programs that qualify families by income and needs. Here is a valuable resource:
• Government Programs for Children with Disabilities | Special Needs Alliance
9. Celebrate accomplishments
When your child achieves something (big or small), take the time to celebrate their success. This will help them to feel proud of their accomplishments and motivated to continue learning and growing.
10. Be the best advocate
Fight for the best information, treatment, doctors, and additional options. Familiarize yourself with the law. Every parent raising a child on the autism spectrum must be their researcher. Try to remember that your child’s disorder is not your fault or the other parent's. Avoid blame. It is hurtful and not productive.
11. Take care of yourself
Be sure to take some time for yourself. As a single parent, this is the most important thing, but it may seem impossible. Try to give yourself some time to do something just for you. This time can provide the fuel to be positive with your children. Perhaps set early bedtimes, which are good for a child’s routine and health, and give yourself time to wind down in the evening. Maybe read some pages in a book, take a bath, or watch your favorite show.
Here are some additional resources:
• How to Survive Caregiver Burnout as a Parent
of Kids with Special Needs - Health - ParentsGetParentingTips.com
• Amazon.com: (Single) PARENTING CHILDREN WITH AUTISM eBook: MARIAN, TY: Kindle Store
• Amazon.com: You Are Not Alone: Stories, Resources and Hope From Autism Moms eBook: Hughes, Catherine, Hallegra, Chou, Abernethy, Christina, Lund, Donna, McCloud, Patti, Teegarden, Holly, Parks, Sarah, Cain, Kelly, Bruno, Jennifer, Gandhi, Hema, Wossidlo, Lenore: Kindle Store
• Help for single parents raising special needs kiddosSearch Videos (bing.com)
• Single Parenting a Child with Special Needs – My Autism Tribe
• Single Parent Support Network | Encourage. Inspire. Empower. (supportforsingleparents.org)
• My ASD Child: Tips for Single Mothers of Children on the Autism Spectrum (myaspergerschild.com)
If you know of a single parent of a child with special needs, take some time to get to know them. Maybe they are your neighbor and need someone to listen and understand their circumstances, or they would just like to be invited for some hot cocoa and a cookie during the holidays.
If you are a teacher of a student supported by a single parent, take time to understand the diagnosis. Ask how you might establish the best way to communicate with them. See their challenges, too. If you are a therapist, realize that a single parent has no one to share their workload and may need adjusted expectations. Parenting is challenging, but parenting a child with different abilities is very challenging. Try to understand those parenting challenges and see
how they may be too time-consuming for one person. Take time to listen, gain understanding, and find ways to accommodate their needs.
Karen Kaplan, MS, is a native San Franciscan. She completed her bachelor’s and master’s degrees in speech pathology and audiology at Arizona State University, Tempe, Arizona. She minored in special education and obtained her speech therapist and special education credentials in California. Karen worked as a speech therapist for schools for 20 years before opening her own residential and education program for students with autism. She worked in credential programs at Sacramento State University as well as UC Davis and spent 20 years directing private schools for those with autism and similar learning challenges.
Karen founded a non-profit, Offerings, which helps cultures globally to understand those with developmental challenges. For seven years, she founded and facilitated an autism lecture series and resource fair in Northern California. Karen still facilitates an annual Autism Awesomeness event. She is currently consulting and helping families, schools, and centers for children, teens, and adults. Karen has authored three books: Reach Me Teach Me: A Public School Program for the Autistic Child; A Handbook for Teachers and Administrators, On the Yellow Brick Road: My Search for Home and Hope for the Child with Autism, and Typewriting to Heaven…and Back: Conversations with My Dad on Death, Afterlife and Living (which is not about autism but about having important conversations with those we love). �� karenkaplanasd.com
Communication Alternatives for Nonspeakers
By Keri Horon, BA
Sitting on the sun-warmed patio at a café, I sipped hot tea. My son, age 21 at the time, was in his classroom about two miles away from me. I knew he was going to see the speech therapist that day, and part of me felt dismayed. When he was younger and attending his special day class at elementary school, I had high hopes about him learning to speak. I would be excited to hear about how the session went and what the therapist noticed. I awaited the day his speech would just break through! Yet, here we were about 13 years later, and he was not speaking. What good would another session of speech therapy do?
As the tea cooled, my mind wandered back to all the therapy we had done within the public school and with private speech and language pathologists. We participated in a lengthy study at the prestigious M.I.N.D. Institute at U.C. Davis, where my son received free, one-on-one, cuttingedge therapies from researchers in the autism field. We also employed Applied Behavioral Analysis (ABA) therapists in our home for 20 hours weekly, emphasizing eliciting speech. Many years and thousands of dollars later, my son remained nonspeaking. At that time, we had never heard of apraxia.
Discovering Apraxia of Speech
The elementary and middle schools referred to him as nonverbal. We did, too, until a young and savvy SLP
(Speech-Language Pathologist) pointed out that my son’s receptive language was quite strong. As parents, we knew this truth; we recognized that there was nothing wrong with his ability to understand other people’s spoken language. So, as the SLP stated, he was nonspeaking but not even close to nonverbal. My son, she said, was not nonspeaking because of autism, but because of something called Apraxia of Speech.
Apraxia is a neurological condition that prevents a person from executing the brain’s instructions to the motor system. Apraxia renders a person unable to synchronize precise muscle movements in order to produce speech. Language is understood, however, producing spoken words, especially upon command, is nearly impossible. Generally, the person with apraxia wants to speak. They are not choosing to be silent. They struggle with the physical formation of the spoken word, which, due to the disconnection, never manifests as speech. Some call it a mind-body disconnect. This can be highly frustrating to the individual.
During his public school education, my son relied on various strategies and methods to communicate. We moved from sign language to PECs® (Picture Exchange Communication System) to a large and heavy Dynavox “V” voice-output device. Each step up allowed him to communicate more readily. Yet, each method had its limitations. As he grew
up, my son exhibited aggressive behaviors, which I often felt were a direct result of not being able to express what was on his mind. Also, we believed when others greatly misinterpreted what he was trying to communicate, anger would naturally follow. We anticipated the day that technology would open new doors and allow a different, more authentic voice to be heard.
A breakthrough
When I finished strolling down speech-therapy memory lane, I sighed and opened my laptop to check my email. Something caught my attention, and I clicked a link. Suddenly, I was watching an interview with a nonspeaking young man named Jamie. I was instantly enthralled.
Jamie was touching letters on a small keyboard. When his letters formed words, the device clearly spoke what he had typed. I had been teaching my son to use a keyboard, and he had advanced to being able to copy-type any writing placed in front of him. He was not able to use a keyboard to type out the thoughts in his head. And what I had hoped for, yearned for, was for him to learn how to type whatever was on his mind. That Helen-Keller-at-the-water-pump moment eluded us. Young Helen made the connection that she could finger-spell what she was thinking and experiencing instead of just spelling back what Annie Sullivan finger-spelled to her. She had been copying Sullivan but not producing her own thoughts through sign language until that mindopening day at the water pump. When the connection was made, her world opened. Was Jamie’s method the missing piece that would help my son bridge the gap from copytyping to communicating his thoughts on his own?
I sat up in my chair and began taking notes. Within an hour I was searching for practitioners who were trained in this method, called Spelling2Communicate, or S2C™. Within a day, I had connected with someone in California who was working with nonspeakers using letter boards to spell. Within three weeks, we had begun Zoom sessions.
It has been three years of weekly sessions, and, once we were comfortable being our son’s communication regulation partner (CRP) at home, we increased the amount of time he was practicing spelling. A CRP, at least in the beginning and intermediate stages, is beneficial when helping a nonspeaker to become comfortable and skilled at using a letter board. For my son, it has been a steady progression as he acquires new skills and grows in confidence. It has been a sight to behold.
Some may wonder how it is that a nonspeaker can make intentional movements on a letter board and/or keyboard when there supposedly exists a mind-body disconnect
resulting from apraxia. The production of speech through the mouth depends on an innate ability of the fine motor system to coordinate internal body parts. The movement associated with pointing to letters depends on gross motor muscle movements of the arm with only fine motor requirements of the finger. The combination of fewer motor system demands, support from a partner, and individualized sensory regulation has worked for my son.
For my son, it has been a steady progression as he acquires new skills and grows in confidence. It has been a sight to behold.
Critics of the various spelling methods now available to nonspeakers voice uncertainty about exactly who is doing the communicating. While beginning spellers may require scaffolding and, in some cases, direct prompting (verbal, visual, gestural), learning to spell via this method is not unlike learning to ride a bike. New bicyclists require a handson approach, and many rely on training wheels for a length of time unique to the individual. A parent of a child learning to ride a two-wheeler bike will call out instructions, provide physical support, and be there for balance and security. They will eventually let go when the time is “right” so the child can ride independently.
Through the last two decades, my son communicated in many different ways. No one system was better than the other. No particular method’s value outweighed another. Each tool gave him ways to interact with those around him, and, for the most part, make his basic needs known. There is a wide variety of communication options available to nonspeakers and non-reliable speakers nowadays, thanks to advances in technology. Unfortunately, more tools exist likely due to the fact that the need for such tools has grown.
Summing up
Approximately 25% to 30% of children with autism either do not develop functional language or are minimally verbal. Communication tools that assist them in expressing themselves are critical to their day-to-day lives. While nonspeakers may learn ways to get their needs met,
COMMUNICATION STRATEGIES
there is much more to communication than asking for something. Nonspeakers have just as many opinions, feelings, and observations as people who communicate through speech. Without a reliable method to assist a person in sharing everything they want to say, the person runs the risk of remaining relatively isolated. With that isolation may come severe frustration at not being adequately heard and understood.
From no-tech/low-tech options to electronic devices and high-tech solutions, AAC (Augmentative and Alternative Communication) strategies are proving increasingly beneficial to nonspeakers. By presuming competence in these individuals and selecting tools that might be a perfect fit for their communication needs, nonspeaking individuals can thrive in ways they previously have not.
Independence grows, social interaction expands, participation in the world around them increases, and self-confidence soars. I have witnessed this in my son, and since finding S2C™ his confidence has multiplied. He now takes part in FaceTime calls with family and can tell us about things that matter to him. The goal is to have him completely independently spelling with a letter board and using a keyboard with voice output on his own. I know that sometime in the near future, my son will “speak” through spelling onto a device that will give a voice to anything he wishes to convey. He will be doing what Jamie was doing in the interview I watched on that sunny day.
It is magnificent to bear witness to nonspeaking individuals like my son who learn to communicate in fuller and robust ways once they click with the right method for them. Whatever the method, communication that goes beyond simple requests gives nonspeakers agency in their own lives. Certainly, not only do nonspeakers desire that, but it is their right as human beings on this planet.
References
Brignall. A et al. Communication interventions for autism spectrum disorder in minimally verbal children. Cochrane Developmental, Psychosocial and Learning Problems Group. https://pmc.ncbi.nlm.nih.gov/articles/ PMC6516977/.
Keri Horon, BA is one part educator, one part journalist, one part writer, and 97 parts mom to a special needs son. Keri is a Marquette University graduate with a BA in Journalism, a BA in English, and a teaching credential from CSU, Fullerton. She taught high school English and yearbook publishing for 25 years. Before teaching, Keri worked for a Chicago-based lifestyle magazine. Finding herself the parent of a child with special needs, Keri applied her skills and talents for teaching, investigating, and writing to become a strong advocate for her son. She has worked as a Peer Coach for the M.I.N.D. Institute at U.C. Davis and as a community parent for WarmLine Family Resource Center. She has written articles for several websites and has helped manage customer service requests for Vest Life, a cloud-based navigation tool for special needs families. Keri writes stories and poems for her own special needs parenting website. Her interests include upcycling furniture, thrifting, gardening, crafting, and photography.
Neuroinflammation: The Hidden Key Behind Autism & ADHD Symptoms?
By Daniela Minardi Pèret Marciano, MSc
Inrecent years, neuroscience has highlighted a crucial yet often overlooked factor in understanding the challenges faced by children with autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD): neuroinflammation. This inflammatory process in the brain is directly linked to learning difficulties, emotional dysregulation, and behavioral changes. But what is the connection between systemic inflammation and brain function? More importantly, how can we intervene to improve our children's quality of life?
Clinical evidence: Results from my research
Between 2021 and 2024, I was the author and coordinator of a study at Hospital Las Higueras in Talcahuano, Chile, where I led a multidisciplinary medical team to investigate the impact of nutritional balance and gut modulation on neurodevelopment in children with ASD. The study followed 26 children and adolescents, with 13 in the control group and 13 in the intervention group. The latter participated in a nutritional and supplementation intervention program focused on restoring gut microbiota and reducing systemic inflammation.
The results were remarkable: there was a significant improvement in gastrointestinal symptoms such as constipation and chronic diarrhea, skin, and respiratory allergies, as well as a reduction in self-aggression episodes, hyperactivity, and sleep disorders. Additionally, the children showed progress in social interaction, emotional regulation, and reduced dependence on pharmaceuticals, reinforcing the link between neuroinflammation and behavioral symptoms. This research underscores the importance of integrative approaches in promoting brain health and wellbeing in neurodivergent children.
Systemic inflammation and neuroinflammation: How are
they related?
Systemic inflammation affects the entire body, and neuroinflammation is deeply interconnected, forming a crucial axis in understanding neurodevelopmental disorders. Imbalances in gut microbiota and chronic
inflammatory processes can compromise the blood-brain barrier—the brain's natural defense against harmful agents. When this barrier is altered, toxins and inflammatory mediators reach the central nervous system, exacerbating cognitive and behavioral symptoms.
Despite this, conventional approaches still prioritize the use of pharmaceuticals to control symptoms, often overlooking strategies based on gut modulation and nutrition. Recent research indicates that nutritional and probiotic interventions can reduce neuroinflammation, significantly improving cognition, behavior, and quality of life for neurodivergent children.
Why does neuroinflammation affect child development?
Neuroinflammation is a chronic immune response within the central nervous system. Unlike inflammation, which occurs when we injure our skin or fight an infection, this type of inflammation is silent and persistent, directly impacting neuronal function.
Studies show that, in children with ASD and ADHD, there is an excessive activation of microglia and astrocytes—cells responsible for maintaining and protecting the brain. When these cells remain activated for extended periods, there is an excessive release of inflammatory cytokines such as interleukin-6 (IL-6) and tumor necrosis factor-alpha (TNF-α), impairing neuronal connectivity and directly affecting behavior and cognition.
The role of the gut in regulating neuroinflammation
One of neuroscience's greatest advances has been the discovery that gut health is directly linked to brain function. The blood-brain barrier and the intestinal barrier function as protective filters, preventing toxins and harmful substances from entering the brain. However, neurodivergent children often experience gut dysbiosis, an imbalance in microbiota that leads to increased intestinal permeability—commonly known as "leaky gut syndrome."
When this barrier is compromised, toxins and inflammatory metabolites enter the bloodstream and reach the brain, exacerbating neuroinflammation. This gut-brain connection explains why gastrointestinal issues such as chronic constipation, diarrhea, bloating, and food allergies are common in children with ASD and ADHD.
How to reduce neuroinflammation and improve symptoms
The good news is that scientifically backed strategies exist to modulate the gut-brain axis, reduce neuroinflammation, and significantly improve symptoms. Here are some key approaches:
1. Anti-inflammatory nutrition
Diet plays a crucial role in reducing inflammation. Natural foods rich in vitamins, minerals, fatty acids, polyphenols, and fiber—such as fruits, vegetables, leafy greens, eggs, fish, meats, and seeds—possess gut-modulating and neuroprotective properties. With the right strategies, these foods can be introduced even to children with food selectivity. Additionally, avoiding ultra-processed foods, chemical additives, refined sugar, gluten, unfermented soy, and dairy is fundamental in minimizing inflammatory reactions.
2. Strategic supplementation
Studies show children with ASD and ADHD benefit from appropriate supplementation with probiotics, vitamins, minerals, omega-3s, and antioxidants. When administered individually and tailored to each child's specific needs, these nutrients help restore gut microbiota balance and reduce brain inflammation.
3. Gut modulation
Restoring gut health involves strategies such as:
• Removing inflammatory foods like refined sugars (which feed harmful microorganisms), gluten, dairy, unfermented soy, ultra-processed foods, and chemical additives.
• Introducing natural foods like fruits, vegetables, leafy greens, meats, eggs, whole grains, seeds, and fermented foods.
• Using prebiotics (fibers that nourish beneficial bacteria) and probiotics.
4. Sleep and stress reduction
Sleep disorders and chronic stress increase cortisol release, a hormone that worsens inflammation and impairs neuronal function. Establishing a proper sleep routine, engaging in regular physical activity, practicing relaxation techniques, music therapy, and reducing screen time can help mitigate these effects.
Conclusion
Understanding neuroinflammation and its connection to gut health is a crucial step in improving the quality of life for children with ASD and ADHD. Nutritional strategies, personalized supplementation, and gut health care have shown scientifically proven benefits. Seeking integrative, evidence-based approaches reduces symptoms and provides a better quality of life and more balanced development.
References
Jayashree R, Gayathri G, Udayakumar N. Nutritional supplements in autism spectrum disorder: a scoping review. Int J Nutr Pharmacol Neurol Dis. 2024 Apr-Jun;14(2):153-156. doi: 10.4103/ijnpnd.ijnpnd_10_24.
Kurowska A, Ziemichód W, Herbet M, Piątkowska-Chmiel I. The role of diet as a modulator of the inflammatory process in neurological diseases. Nutrients. 2023 Mar 16;15(6):1436. doi: 10.3390/nu15061436. PMID: 36986165; PMCID: PMC10057655.
Mallick R, Basak S, Chowdhury P, Bhowmik P, Das RK, Banerjee A, et al. Targeting cytokine-mediated inflammation in brain disorders: developing new treatment strategies. Pharmaceuticals (Basel). 2025 Jan 15;18(1):104. doi: 10.3390/ph18010104. PMID: 39861166; PMCID: PMC11769149.
Tang W, Zhu H, Feng Y, Guo R, Wan D. The Impact of Gut Microbiota Disorders on the Blood-Brain Barrier. Infect Drug Resist. 2020 Sep 29;13:3351-3363. doi: 10.2147/IDR.S254403. PMID: 33061482; PMCID: PMC7532923..
Vargas DL, Nascimbene C, Krishnan C, Zimmerman AW, Pardo CA. Neuroglial activation and neuroinflammation in the brain of patients with autism. Ann Neurol. 2005 Jan;57(1):67-81. doi: 10.1002/ana.20315. PMID: 15546155. Erratum in: Ann Neurol. 2005 Feb;57(2):304.
Xiong Y, Chen J, Li Y. Microglia and astrocytes underlie neuroinflammation and synaptic susceptibility in autism spectrum disorder. Front Neurosci. 2023;17:1125428. doi: 10.3389/fnins.2023.1125428.
Daniela Minardi Pèret Marciano, MSc is a specialist in Neurodevelopment and Integrative Health, with a Master's degree in Naturopathic Sciences. She is a Doctor of Dental Medicine, speaker, and mentor, focusing on personalized clinical care and training families and healthcare professionals in integrative approaches. Her mission is to transform the lives of children with autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD) through strategies based on neuroscience, functional nutrition, gut modulation, and neuroinflammation reduction
Meshell Baylor, MHS, is a mother of four children—two of whom are on the autism spectrum. She serves her community as a social worker and advocate in the Los Angeles area. She has a Bachelor’s degree in human services from Springfield College and a Master of Science degree in human and social services. Meshell continues volunteering and giving within her local area while serving the special needs community.
ALL THINGS OT The Energy Meter: A Concept for Communicating Emotions
By Laura A. Ryan, OT, OTR, OTD
The contrast between personal energy and the energy demanded by the environment or activity is a key factor in identifying dysregulation, and determining the source of that dysregulation is crucial for mental well-being and success in the world. However, trying to harness feelings and emotions is like trying to catch the wind. You know they are present and have a tangible effect on your being, but at the same time, they can easily slip away. Often, this ambiguity makes it difficult to express a feeling in words.
Often, if the feeling is big, such as elation or fear, it is difficult to layer language while experiencing that emotion. Or, the feeling may be unfamiliar, so one may not have the actual language to describe it. Or, perhaps the developmental spot or communication level the child is at doesn’t support the level of language the emotion requires.
Often, feelings can be so big that language development hasn’t caught up yet. Although feelings are multi-layered and complex, categorizing them into high and low energy
can be helpful in the first step of making abstract emotions more concrete.
Understanding energy
Opening up an avenue for communicating emotions is critical in social-emotional health. So, how do we help harness this figurative “wind " and make acknowledging, processing, and communicating emotions more effective? Relating emotions to the change in energy in the body may be a good place to start for your child, and using an energy meter from Autism Level UP may be an excellent tool for this endeavor.
Autism Level UP is a framework created by two developmental neuropsychologists, one autistic and one allistic (who also happens to be an occupational therapist). The main goal of their program is to create an autistic-allistic framework that supports all neurodivergent individuals through education which increases personal development leading to better advocacy for all persons (Autism Level UP!, 2025).
One of their many tools and visuals is the energy meter which aims to level emotions and physical body feelings into energy levels and contrasts personal energy with the energy the activity or environment demands. They maintain that a disconnect between the person’s energy and the environment’s energy is what causes dysregulation. This assertion is important because it takes the onus of adjusting energy off the individual and makes the environment also responsible for adjustment.
Activities to help understand energy
Energy is somewhat ambiguous, and understanding it can be tricky! Using the energy meter provides a visual that helps build language around the concept of energy and can provide a more concrete start level.
Building an understanding of energy is best begun on the most concrete level possible using fun activities that promote engagement and curiosity. This can be done by playing around with our breath and tools that make our breath seen. For example, using our breath to move a
pinwheel or blow a cotton ball off the palm of our hand can provide visual feedback because the pinwheel or cotton ball moves faster or slower. Blowing on a cold morning where we can see our breath is another way of helping to visualize our breath and how breathing can impact our body’s energy level.
While these activities are happening, the caregiver can layer in parallel explanations of what is happening in their body to help the child or companion tune into their own feelings, For example, if we are blowing out hard to move the pinwheel fast, I may state, in an observing way, “I don’t know how you are feeling but I’m feeling my cheeks are moving out like a chipmunk when they are holding a nut in their mouth and my shoulders are high and close to my ears. My belly button is pulling in toward my spine. These feelings make my body feel tight, which makes the energy in my body high.”
Then, you can do the reverse to provide a contrast for low energy. When you gently blow a feather off your palm and watch it float to the floor, you can say, in an observing
Every Child with a Label of Disability is a Child to be Cherished
By Gary Shulman, MS, Ed
During my more than 24 years as Program Director of Social Services and Training Coordinator for Resources for Children with Special Needs, Inc. (now called IncludeNYC) and continuing on as a private consultant and trainer since 2012, I have had the great pleasure of asking thousands of parents of children with disabilities to tell me about their children's talents, skills, abilities, and passions.
That question has often been met with joy and wide smiling grins, "Someone is actually asking me to accentuate the positive!” as the old song says! What a concept! My heart has always been warmed, and my soul and spirit uplifted by the myriad responses gleefully uttered from these proud parents' lips: "Susan is a gifted musician. She hears a song once, then sits down and figures it out on the piano." "My son swims like a fish!" "Thomas has memorized the entire subway system. He is passionate about trains." "Hector always greets me with a hug and seems to know when I feel down. He brightens up my life," and so on. My response is to have everyone in the room praise and applaud these positive stories of hope, joy, and delight. We, of course, also discuss the needs, wants, wishes, dreams, barriers, difficulties, and problems pertaining to having a child with a disability. But it is just as important to recognize their talents.
I have always tried to emphasize that, as your child and your family traverse the rollercoaster journey of growth and development, never lose sight of the fact that your child is so much more than the label of disability that has been assigned to them. Their abilities, skills, and passions are often the springboard to a life lived as independently as possible down the road.
Matthew’s story
I often tell the story of an "angel" who blessed this world by the name of Matthew. When Matthew was born, the doctor told his parents that genetic testing had confirmed Matthew had a very rare condition called I-Cell Disease.
His parents asked, "So what does that mean? When can we bring Matthew home to enjoy and love him?" The doctor proceeded to share his opinion that Matthew should not be brought home and should instead be institutionalized. He then felt compelled to share that Matthew's immunological system would, over five or six years, destroy all organs in his tiny body. "Why put yourself through such misery?” asked the doctor.” He will never grow or develop.”
Needless to say, these caring, loving, dedicated parents took Matthew home and received Medicaid through the Medicaid Waiver program to meet many of his complex medical needs. He was enrolled in Early Intervention where his talented Occupational Therapist, Ilaine, saw his potential skills, talents, and strengths.
Matthew learned to feed himself, walk with a walker, sing, dance, and love. Oh, how this child gave and received love! He was pure love. This beautiful child positively affected every human being who was fortunate enough to know him. I made him pancakes during one visit when he stopped eating for a moment, turned his steroid-filled, barely moving body to face me, and told me: "Hey Gary! These are delicious!" Matthew also had a photographic memory and could tell you every player in the Yankee dugout, give you directions to Grandma's house, and direct you to all food items in the supermarket.
There is no miraculous ending here. Matthew died after six glorious years on earth. These were six years of love and joy, six years of enhancing the lives of everyone who was fortunate enough to have known him. At his funeral were all the friends, neighbors, family members, and admirers whose lives had been touched by this angel of humanity.
Matthew’s memory lives on in every workshop I conduct. His parents graced me with a gift that I will always cherish. Knowing that Matthew would soon be leaving this world, they had him record anything he wanted to say to those he cared for in his life. Sitting on my dresser is a small photo book with Matthew's picture in it. There is a button in that photo book. When you press that button, Matthew's sweet voice can be heard saying, "Hello, Gary. I love you!" His spirit
helps to motivate all parents of children with disabilities who have been told by "professionals" what their children would never be able to do. There are no crystal balls that will tell the families what the future will bring, so always hang on to hope.
Every child with a label of disability is a child to be cherished, praised, and supported. To this day, at 74, I continue to share Matthew’s love as I present workshops filled with information, inspiration, and hope. In my heart and soul, Matthew is smiling.
Gary Shulman, MS, Ed has spent a lifetime supporting vulnerable families and children. He began his career working with children with and without disabilities in an inclusive Head Start program in Brooklyn, NY. He then transitioned to becoming the Special Needs and Early Childhood Coordinator for the Brooklyn Children's Museum for 10 years. His passion for advocacy grew as he worked more and more with parents of children with disabilities. For over 24 years, he has advocated for the needs of these parents as the Social Services and Training Director for Resources for Children with Special Needs, Inc. in NYC. During the last years of his working life, Mr. Shulman served as a private Special Needs Consultant, conducting hundreds of training sessions throughout NYC and beyond to help parents and professionals find and access the services and systems required to facilitate maximizing the potential of their children with disabilities. Now retired in Arlington, VA, but still supporting vulnerable families, serving as an Advisory Commissioner for the Arlington Partnership for Children, Youth and Families. Gary continues his workshop presentations virtually and now also enjoys sharing the poetry that he passionately writes with the goal of leaving this world a better place one word at a time.
Autism & Anxiety Strategies for Identifying Warning Signs and Ways to Support
By Amy Kelly, MBA, MNM
Your heart begins to race, your palms sweat, and your muscles tense up. You have difficulty concentrating, become irritable, and struggle to sleep.
Symptoms of anxiety can manifest both physically and emotionally.
While many people experience anxiety from time to time, when these symptoms occur at a high frequency or become debilitating or disruptive, this may be a sign of an anxiety disorder.
Approximately 40% of autistic people will be diagnosed with an anxiety disorder at some point during their lifetime, compared to 15% of those without an autism spectrum disorder. Anxiety is one of the most common co-occurring mental health conditions in children and adults with autism.
Risk factors of anxiety
Effective coping strategies
Although coping with anxiety can be overwhelming for families with autism, some strategies and interventions can be used to help reduce anxiety and its symptoms.
By Daniela Minardi Pèret Marciano, MSc
Sometimes, anxiety presents in atypical ways in those with autism. An autistic person may experience unusual fears (e.g., automatic toilets, running water, noisy home appliances, and even facial hair on men) or fears due to change (e.g., new schedules, environments, and people), and they may display compulsive rigidity or obsessivecompulsive symptoms.
Risk factors and warning signs of anxiety in an autistic person include:
• High IQ
• Strong language skills
• Difficulty managing emotions
• Physiological responses to stress
• Genetic risk for anxiety
With forethought, determination, and resilience, you and your loved one can transform challenging moments of anxiety into opportunities for growth.
• Utilize existing interventions: Create visual schedules or develop a structured routine, use applied behavioral analysis (ABA) strategies when appropriate, and even use techniques from some educational interventions, like speech therapy or occupational therapy.
• Develop coping strategies: Encourage deep breathing exercises, use calming sensory activities, or distract your loved one with other things or conversations.
• Prepare for changes: Prepare your loved one for upcoming changes, but avoid discussing them too early, which could cause additional anxiety.
• Praise their bravery: Commend the person for remaining calm or successfully adapting to a change or stressful event. (e.g., “You were so brave during the
blood draw! I’m proud of you!”)
• Model appropriate behaviors: Model the behaviors you want to see, such as flexibility, problem-solving, getting out of your comfort zone, and using coping strategies.
• Acknowledge their feelings: Validate your loved one’s feelings. (e.g., “What you’re feeling is real. I understand this is challenging.”)
• Avoid excessive reassurance: You do not want your loved one to become dependent on your reassurance to cope with an anxiety-inducing situation; in some cases, your reassurance may not be appropriate.
• Refer for Cognitive Behavioral Therapy (CBT): For loved ones with fewer support needs and a higher IQ, CBT may be an appropriate way to address anxiety. CBT is a type of therapy that involves changing thinking patterns through problem-solving, safely facing one’s
fears instead of avoiding them, and recognizing when an anxiety-provoking situation may be starting to occur so it can be handled using learned strategies.
• Take medications: In some cases, your doctor may recommend medication to help curb anxiety in addition to some of the behavior strategies.
With forethought, determination, and resilience, you and your loved one can transform challenging moments of anxiety into opportunities for growth
Resources
Autism Speaks Autism Treatment Network Toolkit: How to Use Anxiety Strategies to Help Your Child with Autism
U.S. Department of Health and Human Services Publication No. (SMA) 165009: SAMHSA’s Understanding Anxiety Disorders for Caregivers bulletin University of Rochester’s office handout: “Anxiety in Children with Autism Spectrum Disorder”
Amy Kelly, MBA, MNM, is the mother to Danny, Annie and Ryan. Annie is diagnosed with moderate to severe autism, verbal apraxia, intellectual and developmental disabilities and general anxiety disorder. Amy is the National Director of Family Engagement for Devereux Advanced Behavioral Health, one of the USA’s oldest and largest nonprofit providers of behavioral healthcare, and serves as a family representative on several special needs boards in the community, locally and nationally. In addition, she participates with other patients and families in efforts supported by the Autism Care Network and serves on an executive committee for the American Academy of Pediatrics to assist children and adolescents with special needs and the importance of quality care.
The Inland Empire Autism Assessment Center of Excellence (AAC) is a non‐profit, evaluation‐only center that provides a singular solution to a multi‐specialty evaluation process.
We provide the “Gold Standard” in Comprehensive Diagnostic Evaluations for autism and other neurodevelopmental disorders through a transdisciplinary team of experts in the fields of neurology, neuropsychology, occupational therapy, and speech and language pathology. We’re a trusted resource for thousands of caregivers and hundreds of physicians for children with medical, behavioral, sensory, social, or other complexities.
We look forward to collaborating in supporting the children and families of our shared community!
SAFETY GOALS WITH NICOLE
REDUCING THE RISK OF ABUSE WITH CHILDREN WITH DISABILITY
Finding a Trauma-Informed Therapist for Individuals with Disabilities
By Nicole Moehring
Individuals with Intellectual and Developmental Disabilities (IDD) are three to four times more likely than people without IDD to experience adverse events such as abuse, neglect, and medical trauma (Brenner et al., 2018; Daveney et al., 2019; Haruvi-Lamdan et al., 2018).
Not everyone who goes through distressing or traumatic events will show notable changes in their behavior that are typically linked to Post-Traumatic Stress Disorder (PTSD). Some individuals may process their experiences differently, and while they may be affected, they may not exhibit the symptoms commonly associated with this condition. Each person's response to trauma can vary widely, leading to different outcomes in terms of mental health and behavioral adjustments. However, experiencing a traumatic event can be profoundly impactful and is a crucial aspect of what trauma entails. It is important to acknowledge that understanding the difference between these traumatic experiences and the trauma they can lead to is vital to the healing process. Recognizing and addressing these complexities can pave the way for recovery and resilience.
Individuals with IDD need to receive therapy from a traumainformed therapist. It is vital to find a therapist as soon as possible after an individual has disclosed abuse. These therapists are trained to understand and recognize the profound effects that trauma can have on emotional and psychological development.
Searching for a trauma-informed therapist who works with individuals with IDD can often feel like a daunting task, yet it is entirely achievable. This challenge can be particularly pronounced for individuals with disabilities who have
experienced abuse, as they may require specialized support that understands the intersection of trauma and their unique needs.
Finding a professional who is not only knowledgeable about trauma but also sensitive to the complexities of disability can greatly enhance the healing process. Once you find a therapist, schedule a few introductory appointments for your loved one to meet them. If there is no connection, it's important to find another therapist. A strong relationship is essential for effective therapy; without it, building trust may be difficult, which defeats the purpose of going to therapy.
For individuals with IDD, experiences of trauma can be particularly impactful and particularly complex, often intertwined with their developmental challenges and unique life circumstances. Engaging with a trauma-informed therapist allows them to navigate their experiences in a safe and supportive setting. Such therapists employ techniques that prioritize safety, choice, and empowerment, creating an environment where individuals feel understood and respected. This therapeutic approach helps individuals process past traumas, develop coping mechanisms, and enhance their emotional resilience.
Timely intervention
Timely intervention can help establish a safe therapeutic environment where healing can begin, ensuring that the therapist can adequately address the individual's specific needs and challenges. By receiving intervention from a therapist who is attuned to the specific needs and experiences of those with IDD, individuals are more likely to
achieve positive outcomes. They can gain valuable skills to manage stress and anxiety, improve their self-esteem, and foster healthier relationships, ultimately leading to a more fulfilling and balanced life.
Understanding the impact
Understanding the impact of traumatic events is crucial for implementing effective safeguards that protect individuals with IDD from experiencing similar incidents, particularly in situations involving abuse, neglect, and exploitation. By acknowledging these effects, we can develop strategies to prevent further harm and reduce the risk of the individual being retraumatized. It is essential to create a supportive environment that prioritizes the well-being and safety of individuals with IDD, helping them to heal and rebuild their lives with resilience.
Collecting information
Collecting detailed information about past traumatic experiences is essential, as it serves as the foundation for effective care and support. It is vital to establish policies that require the sharing of important details about significant traumatic events and adverse incidents with future service providers. This approach ensures that individuals receive personalized and informed care based on their unique histories.
By emphasizing the exchange of this vital information, we significantly improve the therapist's capacity to identify and understand the effects of past traumatic experiences on an individual's overall well-being. This deeper awareness allows caregivers to tailor their approaches, recognizing the unique challenges an individual with IDD may face due to their history. Furthermore, such transparency promotes a more collaborative atmosphere where practitioners can work together to develop comprehensive treatment plans. Ultimately, this focus on communication cultivates a more nurturing and effective care environment where individuals with IDD feel supported in their journeys toward healing and recovery.
References
Brenner J, Pan Z, Mazefsky C, Smith KA, Gabriels R. Behavioral symptoms of reported abuse in children and adolescents with autism spectrum disorder in inpatient settings. Journal of Autism & Developmental Disorders. 2018;48(11):3727–3735. doi: 10.1007/s10803-017-3183-4. [DOI] [PubMed] [Google Scholar]
Daveney J, Hassiotis A, Katona C, Matcham F, Sen P. Ascertainment and prevalence of post-traumatic stress disorder (PTSD) in people with intellectual disabilities. Journal of Mental Health Research in Intellectual Disabilities. 2019;12(3-4):211–233. doi:10.1080/19315864.2019.1637979. [DOI] [Google Scholar]
Haruvi-Lamdan N, Horesh D, Golan O. PTSD and autism spectrum disorder: Co-morbidity, gaps in research, and potential shared mechanisms. Psychological Trauma: Theory, Research, Practice, & Policy. 2018;10(3):290. doi: 10.1037/tra0000298. [DOI] [PubMed] [Google Scholar]
Nicole Moehring’s daughter and son, who has autism and Fragile X Syndrome, were both victims of sexual abuse. As a mother suffering through this unbelievable nightmare, Nicole witnessed extreme differences in the justice system in terms of how her daughter was believed and treated so well and how her son was not. In addition, she recognized the distinct differences in recovery, trying to find support and resources. Nicole and her daughter Maci founded Voices of Change 2018 (VOC18), a nonprofit organization, to begin making much-needed change for children with disabilities and their families.
VOC18 is a disability-led national organization piloting our groundbreaking programs in Ohio. Their mission is to reduce the risk of abuse, neglect, and exploitation of children with disabilities. By sharing their lived experiences and through collaborations with law enforcement, mental health, medical professionals, and other similar organizations, they are building a foundation of advocacy, awareness, education, resources, and support for children with disabilities and their families.
Keeping Your Child with Autism Safe at School During an Emergency
By Dr. Ronald I. Malcolm, EdD
Parents of children with autism may worry about what will happen to their child during a school emergency. Here are some straightforward tips that can help keep your child safe at school in case of an emergency.
1. Discuss transitions with school
As many of you know, transitions or unexpected changes to the daily routines of a child with autism can cause anxiety and fear. It is essential to fully discuss this with all relevant school staff. They need to understand that your child has autism and may exhibit aversive or unusual responses during an emergency. Don’t assume that everyone at the school is aware of your child’s autism. Autism is not always visibly apparent and comprehensible to others. When teachers and
staff members are informed about your child’s level of autism, they may be better equipped to assist your child during an emergency.
2. Practice possible scenarios at home
You can assist your child with handling emergencies by practicing various scenarios at home with the entire family. This could involve what your child needs to do during a possible fire in your home. Practice how they should exit the house. Ensure they know where to go in the event of a tornado or earthquake occurring. You can also review with them what to do if someone becomes ill at home, gets hurt, or passes out. They need to know how to dial the emergency services. Having information posted in a secure location in the home will also assist
them when interacting with an emergency phone operator. The list could contain their address, names of their parents, cell phone numbers of parents, etc.
3. Use social stories
Parents and teachers can collaborate to develop social stories. These stories may cover a range of emergency situations and outline how you wish your child to respond. They should be read and reviewed regularly both at home and at school. You can actively involve your child in discussions about safely handling emergencies.
When teachers and staff members are informed about your child’s level of autism, they may be better equipped to assist your child during an emergency.
4. Identify safe individuals at school
It is important for your child to be able to identify “safe” individuals during an emergency. This is a great way for you to fully involve your child in this process. Your child may only be able to identify a single safe individual. Other children with autism may be able to identify several “safe” individuals. Don’t assume that your child will select their classroom teacher as the “safe” individual. Some students with autism may identify a paraprofessional from within their classroom. Others may identify another student, a coach, an administrator, the school counselor, etc.
5. Identifying safe places at school
Some emergencies involve moving your child from one location to another, which can be a challenge for some children with autism. However, your child may not be in the classroom during an emergency. They may be in the cafeteria, gym, playground, or even the restroom. They must identify “safe” places to go within the school if an emergency occurs or if they get separated from their class.
6. Fully participate in drills while at school
Some adults struggle with the idea of children with autism practicing emergency drills at school. They worry that the practice drills will be upsetting. Some children with autism respond negatively to loud noises, such as fire and tornado alarms. They may demonstrate dysregulated behaviors during an intruder drill at school. Yet, involving your child is critical for knowing how they may react during an actual emergency. It not only allows them to practice their skills during these safety drills, but it also allows them an opportunity to witness other students their age who are responding to the same situation.
7. Use a buddy system
Many teachers have developed a buddy system within their classrooms during emergency situations. This system allows each student to be paired with another student who assists them during an emergency. This could be another student in the classroom with whom your child is comfortable or has indicated they enjoy interacting. It could also be a student your child has identified as a “safe” individual.
8. Practice how to follow directions
Children with autism may display difficulty with following directions. The ability to follow directions can be practiced daily at school. A visual schedule of how to exit the building during a fire or where to go in the building during a tornado drill can be developed and practiced. Roles and responsibilities can be outlined for your child even during an Intruder Drill at school. Your child may be the student that turns the lights out or pulls the blinds to cover the classroom windows. Giving your child a specific task to focus on during an emergency may help to distract them from the situation occurring and assist in keeping them calm.
9. Create a school Safety Plan
It is critical that the school has a written Safety Plan in place for your child with autism. While the classroom teacher may be very aware of your child’s level of autism and their struggles during an emergency drill, a substitute teacher may be unaware of the situation and caught off guard.
Administrators must be made aware to share this Safety Plan or Emergency Operational Plan with the substitute teacher as they begin working in the school. Placing such plans in a binder in a safe location in the classroom can make them easily accessible for the substitute.
In addition, your child with autism needs to be actively involved in how family reunification occurs during an actual emergency. Knowing that their parents will be notified if an emergency occurs may reassure your child. Knowing that a specific location has been selected for
them to reunite with their families may also reduce their level of anxiety.
10. Don’t underestimate a child’s abilities
Many people underestimate the ability of a child with autism to handle an emergency effectively. Some students may struggle with loud noises, sudden changes in routine, lights turning off in classrooms, or even being dismissed from school early due to weather-related conditions. However, the important thing to remember is that many neurotypical children also panic or develop anxiety surrounding these situations, and we don’t exclude them from the practice drills. Just as a student without autism develops confidence and the skills necessary to handle emergencies at school, so will your child with autism. It may take extra time, practice, and interventions, but in the end, if it contributes to keeping them “safe,” then it is all worth it.
Dr. Ronald I. Malcolm, EdD, works with students with disabilities in the Northwest Arctic. He recently retired as an Assistant Director of Special Education for a public school district. Dr. Malcolm is also an Associate Faculty Member with the University of Phoenix and a Special Graduate Faculty member at the University of Kansas. He has Bachelor level degrees in English and Special Education. He holds Master level degrees in Counseling, Special Education, and School Administration. His Doctorate degree is from Northern Arizona University in Educational Leadership. His postgraduate degrees are in Positive Behavior Supports and Autism Spectrum Disorders. He has worked for the past 38 years with students between the ages of three and 21 with disabilities and various medical needs in both school and community-based settings.
Exhausted mother fighting with every sinew in her soul
Just to barely maintain and stay sane
You see, caring for a young adult these days
With multiple and profound special needs
Can drain you dry and make you cry
Sometimes your heart and spirit just bleeds
But each day you wake, you love again
Hope motivates your soul
You hug your child, you advocate
Once again, you’re on a roll
You fight for help, you fight for support
You fight, you fight, you fight!
Why can’t it just be easier?
Lord knows that’s just not right!
But love is a mighty, powerful force
And your child is your child is your child
No matter the disability
For that child brings monumental pride
Others might stare………not understand
But you know the bottom line
This is your child, nobody is perfect
And for you, that’s perfectly fine
Gary Shulman, MS, Ed has spent a lifetime supporting vulnerable families and children. He began his career working with children with and without disabilities in an inclusive Head Start program in Brooklyn, NY. He then transitioned to becoming the Special Needs and Early Childhood Coordinator for the Brooklyn Children's Museum for 10 years. His passion for advocacy grew as he worked more and more with parents of children with disabilities. For over 24 years, he has advocated for the needs of these parents as the Social Services and Training Director for Resources for Children with Special Needs, Inc. in NYC. During the last years of his working life, Mr. Shulman served as a private Special Needs Consultant, conducting hundreds of training sessions throughout NYC and beyond to help parents and professionals find and access the services and systems required to facilitate maximizing the potential of their children with disabilities. Now retired in Arlington, VA, but still supporting vulnerable families, serving as an Advisory Commissioner for the Arlington Partnership for Children, Youth and Families. Gary continues his workshop presentations virtually and now also enjoys sharing the poetry that he passionately writes with the goal of leaving this world a better place one word at a time.
Understanding Body-Focused Repetitive Behaviors: What Parents Need to Know
By Jan Stewart
My son, Andrew, picks his lips until they swell and bleed. He picks his scabs until they become infected with oozing puss. Telling him to stop, begging, pleading, and bribing certainly don’t work. Yesterday, he told me, “Mom, I desperately want to stop, but it’s too tempting. I can’t resist.”
Body-Focused Repetitive Behaviors (BFRBs) are one of the most misunderstood mental health disorders. Fortunately, there are practical, science-backed insights for parents and caregivers.
BFRBs are not a sign of deep-seated trauma, they are not due to poor parenting, and they shouldn’t be either trivialized or over-pathologized.
What are Body-Focused Repetitive Behaviors?
BFRBs are unwanted, compulsive picking, pulling, and biting behaviors that cause significant impairment and disruption in daily life, with physical damage. Repeated attempts to stop are unsuccessful without help. Two of the most common types are:
• Hair pulling, known as trichotillomania, to the extent of
patchy spots or baldness on the head, face (eyebrows, eyelashes), or other parts of the body
• Skin picking, also called excoriation, most commonly on the face, arms and hands
• Nail and cuticle biting, hair chewing, and lip and cheek biting are other examples.
The Diagnostic and Statistical Manual of Mental Disorders (DSM-5-TR) classifies BRFBs as Obsessive Compulsive and Related Disorders. Unlike OCD, however, individuals do not experience intrusive, distressing thoughts. Some engage in BFRBs when anxious, others when relaxed, bored or involved in specific activities. The behavior often occurs unconsciously, preceded by an overpowering urge to pick, pull, or bite. Andrew is usually unaware he’s picking until he’s in the midst of it, and he enjoys the sensation of removing and feeling small pieces of his skin between his fingers.
BFRBs provide short-term gratification through physical sensations, emotions, or thoughts and feelings. But longerterm consequences include baldness and thinning hair, repetitive strain injuries, tendonitis, eye irritations and infections, skin infections, scarring, and hairballs. Children can feel shame and helplessness, isolate themselves, and experience teasing and bullying.
Estimates are that BFRBs affect 2-5% of the population. They commonly start in toddlerhood or adolescence, a time of heightened self-consciousness around appearance combined with hormonal, nervous system, and structural changes.
BFRBs and co-occurring conditions
The great majority of BFRBs are paired with co-occurring conditions, such as tic disorders, Attention-Deficit/ Hyperactivity Disorder (ADHD), and autism. Dr. Fred Penzel, Executive Director of Western Suffolk Psychological Services, explains that the physical act of picking and pulling is the same in both neurodivergent and neurotypical children,
although their ability to explain what they’re experiencing can be different.
The exact causes of BFRBs are unknown, although genetic and environmental factors play roles. Dr. Charles Mansueto, Founder and Director of the Behavior Therapy Center of Greater Washington, notes that repetitive behaviors, whether tics, movement disorders, BFRBs, or stimming, all serve a purpose. Some studies point to BFRBs occurring more in those with poor self-regulation and/or impulse control. Some researchers believe that self-stimulatory/ stimming behaviors encompass BFRBs: they are often triggered by stress, anxiety, excitement, or boredom and are self-soothing, calming, and even pleasurable to many autistic children.
Evidence-based treatments
BFRBs are widely misunderstood. Inaccurate myths continue to prevail about sexual molestation or violence causing hair pulling, causing some parents to worry if their child has been sexually abused. Caregivers are told they should be firmer and simply insist their child “Stop that habit!”
It’s not that easy. BFRBs are highly complex, with a multitude of contributing factors. No “one size fits all” approach works.
Comprehensive Behavior Treatment for Skin Picking and Hair Pulling Disorders (Com-B) is the gold standard. Years ago, Dr. Mansueto identified five categories into which his patients’ BFRB triggers fell: sensory, cognitive, affective, motor, and place (SCAMP). This led him to create Com-B, which uses cognitive behavioral techniques to help a child identify triggers and then select the most appropriate treatment(s) to interrupt and substitute their problematic behavior patterns with healthy alternatives tailored to their needs.
There are four phases to Com-B:
• Phase 1: Assessment of the factors that trigger and reinforce BFRBs:
• Sensory: A child might detect rough and otherwise irregular skin
• Cognitive: A child might think his cowlicks (irregular hairs) are ugly
• Affective: A child might feel stressed or bored
• Motor: A child’s hands might take on a life of their own, feeling around for rough spots on their body, starting “a chain of behaviors on a destroy mission”
• Place: A child might only pick and pull in specific locations, such as in bed or when looking in a mirror
• Phase 2: Joint identification and selection of specific target behaviors that are contributing to pulling or picking: The SCAMP assessment helps clarify how and why the problematic picking or pulling occurs and continues. The therapist and child can review these factors together and determine which targets and strategies to focus on for intervention.
• Phase 3: Implementation of specific interventions: A child who picks scabs while watching TV in her den might wear finger bandages to trigger awareness, squeeze her hands into fists, hold a fidget toy to occupy her hands, or change TV-watching locales.
• Phase 4: Evaluation, modification, and relapse prevention: BFRBs are tenacious, and reoccurrences can happen. Learning maintenance strategies to minimize relapses is critical.
Depending on the child, Com-B incorporates other treatments, such as Habit Reversal Training, Acceptance and Commitment Therapy and Dialectal Behavior Therapy, to bolster its effectiveness.
There are currently no approved medications for BFRBs. Dr. Penzel’s website has information on over-the-counter medications that help some children.
How can parents support their child?
Dr. Mansueto stresses the importance of caregivers becoming educated about BFRBs. There’s no easy fix. BFRBs are not a sign of deep-seated trauma, they are not due to poor parenting, and they shouldn’t be either trivialized or over-pathologized.
Educate your child and obtain a thorough assessment of their behaviors by a qualified clinician. Partner with their therapist and participate in their therapy sessions so you can practice strategies together at home:
• Help identify triggers, particularly if your child has difficulty expressing themselves
• Creating a comfortable, sensory-friendly environment
• Adhere to a consistent, structured routine
• Find alternative outlets that help distract your child, such as fidget toys, stress balls, textured objects, or sensory-friendly objects they enjoy
• Use visual supports and social stories with clear, concise explanations and no metaphors or analogies
• Watch for signs that your child is becoming overwhelmed or overstimulated. They may need more frequent breaks and shorter therapy sessions
• Motivate your child by incorporating meaningful rewards they can earn
The importance of compassion and patience
Caregivers need to approach BFRBs with compassion, as frustrating as they can be. Let your child know you understand. Dr. Penzel advises not to try to treat the BFRBs
yourself: caregivers lack the requisite knowledge and are too emotionally involved to be objective. Don’t nag, criticize, or judge: this heightens stress, which, in turn, exacerbates BFRBs. It takes patience.
Resources for parents and caregivers
The TLC Foundation for Body-Focused Repetitive Behaviors has a wealth of information at bfrb.org, including The Trichotillomania Learning Centre, support groups, lists of therapists and an annual conference. Additional BFRB therapists can be found through the Canadian BFRB Support Network at canadianbfrb.org or by searching online for Com-B providers.
Helpful books include:
• A Parent Guide to Hair Pulling Disorder by Suzanne Mouton-Odum and Ruth Golomb
• Comprehensive Behavioral (ComB) Treatment of Body-Focused Repetitive Behaviors: A Clinical Guide by Charles Mansueto et al
• The Hair Pulling Problem by Fred Penzel
• Overcoming Body-Focused Repetitive Behaviors by Charles Mansueto and Sherrie Vavrichek
Hair Club for Kids® provides non-surgical hair replacement services to eligible children. In addition, some insurance carriers cover hair pieces as prosthetic devices.
Final thoughts
I was fascinated to learn that BFRBs are common throughout the animal kingdom. Our dog, Emmie Mae, repeatedly pulls out the fur on her sides until her skin is exposed and bleeding, so our family’s all in this together!
BFRBs are not easy to treat, but Dr. Penzel reminds us that there is help and there is hope. Expect some slip-ups and regression. Prioritize connection and understanding. With your compassion and support, your child can succeed!
Jan Stewart is a highly regarded mental health and neurodiversity advocate, author, and parent. Her award-winning memoir Hold on Tight: A Parent’s Journey Raising Children with Mental Illness is brutally honest and describes her emotional roller coaster story raising two children with multiple mental health and neurodevelopmental disorders. Her mission is to inspire and empower caregivers to have hope and persevere, as well as to better educate their families, friends, healthcare professionals, educators, and employers. Jan chairs the Board of Directors at Kerry’s Place Autism Services, Canada’s largest autism services provider, is a Today’s Parent columnist, and was previously Vice Chair at Canada’s Centre for Addiction and Mental Health. She spent most of her career as a senior Partner with the global executive search firm Egon Zehnder. Jan is a Diamond Life Master in bridge and enjoys fitness, genealogy, and dance.
�� janstewartauthor.com
Your Incognito Exceptional
Parenting Questions Answered
By Kate C. Wilde
Hello everyone!
Thank you for submitting your questions. Reading them and gaining a glimpse into your lives is always a pleasure. Please know that your inquiries will assist many other families facing similar concerns. We have an exciting announcement: Starting in May 2025, when we receive your question, we will express our gratitude by offering you free access to a prerecorded webinar designed to support you and your child or adult in handling meltdowns. I have named this the “Incognito Issue” because I have selected a variety of questions submitted by families wishing to remain anonymous. No names will be mentioned.
My daughter is three and chews on everything, especially hard things. She chews on the banisters in my house, the garden fencing, and even the corner of the kitchen table. I am afraid she will hurt herself or break her teeth. She won’t listen to me; how do I get her to stop?
There are two potential causes for this behavior:
1. This could be due to your daughter needing a lot of stimulation to her jaw and mouth area. I suggest that you offer strong squeezes to that area. You can do that by putting your hand on the back of her head and another over her mouth and jaw area and squeezing both together. When you do this, be mindful of how she responds to it, and let go as soon as you sense she may not want you to do that. In my experience, many children or adults chew on hard things, like a lot of pressure in this area, so do not be afraid to slowly increase the amount of pressure you apply until you get to an amount that works for her.
The other thing you can do is tap her mouth area. Make sure you do this in a rhythmic way. Keep a steady, predictable rhythm. If you see she likes this pressure, be sure to give her this kind of stimulation at least once every hour. When you do it, tell her verbally that she can come to you and ask for this anytime she wants to chew. When you see she is going to chew, offer her a squeeze. Over time, she may choose your pressure over chewing an object.
2. Children or adults may chew things because they want to know where their mouths are in space. This is due to a challenge with proprioception, which means they have difficulty feeling their bodies in space.
Chewing may help your daughter know where her mouth is, which is important for several things, but especially talking, eating, and drinking. We do not want her to stop doing this, as it serves a good purpose, but
we can help her chew on things that will be better for her teeth.
Give her an alternative object to chew on. Get a big box and fill it with chew toys and things she can chew on. Make sure they are sturdy and hard. As she likes to chew on wood, the harder they are, the better. Have these available in each room she is in. Each time she goes to chew on the wood, gently and quickly move her away from the wood and give her one of the other objects to chew on. Make this exchange each time she goes to chew on the wood, and be consistent with this, no matter how many times you have to do it. She will get the message and most likely get what she needs from the toys instead of the wood. Consistency is key!
My son spits. I find this very embarrassing, especially when he does it in public. He spits into his hand, smears it onto his other hand, and plays with it. His teachers do not like this; they say it is unsanitary as he touches other things. I tried to get him to stop by making him wear mittens he could not take off. This stopped him from spitting into his hands, but then he spat on the floor repeatedly and watched it fall. His teachers do not like this either.
Firstly, it was a very creative idea to put mittens on him. However, as you experienced, you do not have control over whether your son spits or does not spit. That is because he is in total charge of that. What we can and cannot control is an important concept to get. For example, you can control what foods you make available to your son, but you cannot control whether he decides to eat them. You can control what objects are within reach of your son in your house, but you cannot control whether he throws them. In this instance, you can control what you do when he spits, but you cannot control whether he decides to spit or not. Really accepting this and making peace with your lack of control will hopefully remove any pressure you may be putting on yourself to stop him. This pressure just creates anxiety, which is felt by your son and will increase the likelihood of him spitting. The easier you feel around his spitting, and the more relaxed you are, the more relaxed your son will be. I know this may not be want you want to hear, but it is the reality.
Some children spit as a button push and are looking for a reaction from the people around them, but it seems from your description that your son is spitting as a stim. It is something that helps him regulate and calm his nervous system. This is a good thing; maybe seeing the reason behind it will help you accept it a little more.
One thing that has worked well for other families that I work with is to help the individual know where they can spit. Get a
KATE MAKES IT GREAT
little tray and let him know he can spit onto that tray and look at it as much as he wants to. That way the spit is contained in one place, and he learns not to spit on other people’s objects or space. Each time he goes to spit on his hands, give him the tray and verbally explain to him that he can spit onto the tray. Make sure you bring the tray with you wherever the two of you go. You can also explain this to his teachers.
My non-speaking teenage son with autism will just start crying. When he does this, he will really cry, in a “heartbroken” kind of way. It seems that he is really, really sad. But I have no way of knowing why he is crying or what has happened to him. When he starts crying, there is nothing happening that I can see to have caused his crying at that moment. It is really troubling me. Why do you think he is crying?
This is a great question and one that I am asked a lot. This is often a sign of overwhelm and overload. To us, it may seem that nothing has happened, but something very small may have preceded his crying that we did not register because it was so small. It could be the sound of you turning the water tap on, the smell of supper cooking, or the microwave's beep that “breaks the camel's back,” so to speak. It is a breaking point that pushes your son’s ability to cope over the edge, and thus he has a Neuro-Crash. A Neuro-Crash is when the Imposed Situation overwhelms his brain so that his coping mechanisms shut down. By Imposed Situation, I refer to the environment or circumstance that he is exposed to throughout his day. His crying episodes could result from a buildup of those from his day, a couple of days or weeks.
A solution is to look at the bigger picture of his schedule and life and remove a few things. Favor home more, as home is where he can decompress and recharge without the pressures of outside life and stimulation. Make sure he has a little more downtime between activities. During these downtimes, refrain as much as you can from offering
him things or asking him about his day. Instead of being an initiator, think of yourself as a helpful responder. Being a helpful responder means you will respond to anything he wants or asks you during his down time, but not initiate anything, including things you think he may like. This will give him the space he needs to recharge. Re-charging is something our children know how to do; all we need to do is give them the space to do so.
Please continue to send in your questions. I look forward to seeing you in the next issue!
Kate C. Wilde has spent the past 30 years working with children and adults on the autism spectrum and their families, as well as with therapists, educators, and schools. She is the author of the acclaimed books Autism Abracadabra: Seven Magic Ingredients to Help Develop Your Child's Interactive Attention Span, Autistic Logistics: A Parent's Guide to Tackling Bedtime, Toilet Training, Tantrums, Hitting, and Other Everyday Challenges, and The Autism Language Launcher: A Parent's Guide to Helping Your Child Turn Sounds and Words into Simple Conversations, and is renowned for the well-attended courses she teaches throughout the U.S., Europe, and Asia. Her YouTube autism quick-tip videos, delivered with her trademark infectious enthusiasm, have garnered a worldwide following.
Send us your parenting questions, woes, concerns, and tricky situations with your beautiful, exceptional children. This includes all of you outstanding professionals out there. Kate will answer up to five questions in every issue in her "Kate Makes It Great!" column. Kate has worked with children and adults on the spectrum for the past 30 years. She has clocked more than 20,000 therapy hours and has worked with well over 1,500 different children. Whatever you are facing today, Kate has most likely experienced it in some form. Her answers will be practical, doable, inspiring, optimistic, down-to-earth, and real. Together, there is nothing we cannot face with a little joy and love.
ADVICE FROM MESHELL
Establishing Boundaries for an Exceptional Teen Entering the Dating Scene
By Meshell Baylor, MHS
"People with disabilities deserve to find love and companionship, and efforts should be made to make the dating process more inclusive and supportive." – Unknown –
You watched your child grow from a little peanut to this exceptional young teen or adult right before your eyes, and you wondered why time passed so quickly. You closely observed them as they learned life skills like doing their hair, picking out their outfits, and going out with friends. You find your teen walking out of the room to talk to their friends, planning outings, and the words come out, " I have been asked out on a date." The World Institute on Disability claims that, compared to their peers without disabilities, people with disabilities typically begin dating later in life. So, what do you do when your exceptional child says they are ready to date?
You first prepare them for the following:
The “Talk”
We live in a society where online/cyberspace is the modern technical way of dating. Teach your exceptional teen not to give out personal information, meet strangers in strange places, or talk to strangers on the phone that may pose a danger to them and others. As a parent of a teen or adult, make sure you monitor what sites and people they interact with.
Screening people
The teen is making friends and meeting new individuals. As a parent/caregiver, it is okay to ask questions and get to
know their intentions with your exceptional teen/adult. Ask questions such as: Who asked you on a date? Where did you meet them?
Setting boundaries
As your exceptional person begins to date and make friends, teach them how to set boundaries with people. Setting boundaries is all about self-care and safety. If your child needs to be home from a date or hanging out with friends, give them a curfew. A curfew lets the child and their friends comprehend the importance of rules and boundaries.
Talking to parents
As your exceptional child prepares to date or hang out with friends, get to know the parents. Establish a line of communication so that if your child is dating or going out with friends, there is an understanding of which parent may chaperone the date, provide transportation, or even help with facilitating the date.
Having the "S" talk
For the exceptional teen or adult, talking with them about sexual intercourse is important. Scheduling a time for a visit to their primary care provider (PCP) to talk about health, sex, the physical body, and protection is very important. Note: This applies to teens and adults who want to speak with their provider about safety, protection, and health.
Watching your exceptional child grow into a teen and young adult can be nerve-racking sometimes, but as a parent, your job is establishing an open communication line. This open line of communication during your child’s dating era allows you and the teen to build healthy relationships of trust. It allows you, the parent and caregiver, to talk to your exceptional one about dating, relationships, rejections, and even processing breakups. These are life lessons that we must provide support for our exceptional youngsters.
As a parent/caregiver, I encourage you to become more involved in finding organizations that help your exceptional child date and meet people in their community who will encourage positive dating encounters. Here are some resources and tips to help with your exceptional person's dating.
Watching your exceptional child grow into a teen and young adult can be nerve-racking sometimes, but as a parent, your job is establishing an open communication line.
Dating sites
If you know an exceptional young adult who wants to meet people, seek out positive websites geared toward dating for special needs individuals.
Teen/adult social groups and organizations
Seek organizations with virtual or in-person social groups for teens to talk and build communication goals before they start dating.
You might wish to join an organization for exceptional teens or adults to plan community events. This will allow a teen to meet new people in their community and socialize.
We as parents cannot prevent our exceptional teens and young adults from growing up, but we can support them. As they embark on a new journey of learning how to date or even meet new people, let's take the time to be grateful we are here to witness this new journey. We can also take time to practice safety skills with our exceptional loved ones that will keep them happy and safe.
Resources & References
World Institute on Disability: https://wid.org/dating-with-a-disability/ Disabled Dating Singles: https://www.disabledsingles.com Note: This is a dating site for adults with special needs
Autism Society Teen/ Adult Social Group: Fun, engaging social class for teens and adults to meet new friends, activities, and hang out!
https://autismsociety.org/ or check with events@ieautism.org
Meshell Baylor, MHS, is a mother of four children—two of whom are on the autism spectrum. She serves her community as a social worker and advocate in the Los Angeles area. She has a Bachelor’s degree in human services from Springfield College and a Master of Science degree in human and social services. Meshell continues volunteering and giving within her local area while serving the special needs community.
�� meshellbaylor.wixsite.com
�� Center for Autism and Developmental Disabilities
INSTAGRAM @imalittlebigb
Education Through Music: Teaching Music and Geometry to Students with Autism at Elementary Public Schools. Part 2
By Aygul Hecht, BS, PhD
When I began teaching students with severe autism spectrum disorder (ASD) at a public school in California (CA), I was challenged by my students’ disinterest and passive participation in music. Initially trying to bring the same techniques and methodologies that I used in my general education classes, I finally realized that the “general music class” techniques and methods were ineffective in the classes with ASD students. Therefore, I developed new methods and methodologies to meet my ASD students’ needs.
In this article, I briefly describe one aspect of my lesson plans: students’ emotional response to music
While ASD is a complex condition with a wide range of symptoms, social interaction difficulties are a common hallmark. People with ASD often face challenges in various aspects of socialization, including making friends, interpreting social cues, and engaging in reciprocal conversations. (Social Difficulties in Autism Spectrum Disorder, 2024). With a goal of helping my students transition to adulthood without stress or frustration, I made all efforts to ignite my students with music and activate their “sad” and “happy” emotions. The emotional aspects of music can help students with ASD develop social skills and equally participate in all social activities available to all US citizens.
Introduction
When I began teaching music to students with severe forms of autism, I noticed that almost 65-70% had problems expressing their emotions, facial mimicking, or body language. This drastically affected their participation in the class. I tried to change songs and do different activities, yet for the 30-minute class, a majority of my students kept withdrawing into themselves and showing no interest in the music.
My observation of students with severe ASD brought me to the point where I decided to expand my methods of teaching with more innovative techniques. I did not intend to do scientific research or survey; I simply wanted to find a solution for how to ignite my ASD students through music. As an itinerant music teacher, I had been teaching general education classes with mainstreamed special education students for years. However, the Structured Autism Classes (SAC), K-3, was something new that I had to do at one of the largest public school districts in Orange County, CA.
At the beginning of the school year, I introduced Antonio Vivaldi's Four Seasons to my general education students. In preparation for the class, I chose one of the CA Arts Standards for Music, which interprets music as a cluster of emotions and creativity. The California Department
of Education guidance stated, “With limited guidance, demonstrate and discuss personal reasons for selecting musical ideas that represent expressive intent.” (Creating— Anchor Standard 2: Organize and Develop Artistic Ideas and Work, 2019) Interestingly, keywords such as “musical ideas” and “expressive intent” are repeated in each column of the guidance for each grade from PK-12.
Moreover, CA Department of Education guidance illuminated the term “expressive intent” as “The emotions, thoughts, and ideas that a performer or composer seeks to convey by manipulating the elements of music” (Music Glossary, 2019).
I chose two movements from Vivaldi’s Four Seasons, Spring and Summer. The chosen videos were not the plain “camerata” versions but a series of choreographed movements articulated by Mr. R, the creator of these YouTube videos. The picturesque background and body movements depicted the emotional context of the baroque music.
For example, Mr. R used a scarf to illustrate the blooming nature during the spring; meanwhile, he used the desert background and a strong sun image to show the “heat” of the summer season
Both videos together were about eight minutes long. I played these videos one after another to my general education students and observed their emotions and attention. All my general education students were “absorbed” by these two music stories. After listening to music and watching “Spring” and “Summer” stories,
the general education students actively participated in discussion and used the colloquium terms to compare and describe music in the first and the second movements of “Four Seasons”. For example, they used “Bright”, “Vivid”, “Blooming” terms for the “Spring Movement” and “Dramatic” and “Intense” for the “Summer Movement”. Also, all my general education students participated in mirroring the choreography of Mr. R.
Having had success and 100% emotional response from the general educational students to Vivaldi’s “Four Seasons”, I was eager to “shake emotionally” my “Structured Autism Class” (SAC) students as well. Yet, I failed.
None of my students, from the older or younger groups, showed any interest in choreography or music. I was puzzled. I was challenged. Then, I went back to the library and I read more books and articles about autistic children.
Music and emotions: tracing the geometrical shapes
The article The Children with Autism ‘See’ This Optical Illusion in a Unique Way, Experiment Finds that summarized Italian psychologist Gaetano Kanizsa’s and neuroscientist Emily Knight’s research about mental processes of autistic children helped me to get a clear picture on how to approach students with severe ASD and receive their emotional response to music.
Carly Cassella writes, “To transform reality into the mental landscape that occupies out minds, our brain performs a multitude of operations. Some are short cuts; assumptions that become obvious the moment we attempt to make sense of the conflict presented in an optical illusion. For individuals with autism, those short-cuts and mental operations could work a little differently, subtly influencing how the brain constructs a picture of everyday life.” (CASSELLA, 2023).
By reading the article, I understood that my ASD students process and construct a picture of everyday life differently than I or my general education students do. In her article, Cassella states the study conducted in 2018 revealed children with ASD had difficulties seeing a moving object and seeing a color at the same time because their brain was focusing on either a color or a moving object, but not both. Besides, children with ASD struggled to understand the body language unless they paid a very close attention. According to Emily Knight, the brain of youngsters with ASD is measured in a very passive phase of perception of the body motions and thus, children with ASD have harder time to interpret other people’s emotions and body language.
My SAC students remained passive and unresponsive to “happy” or “dramatic story” delivered by Mr. R in the “Spring and Summer Movements” of Vivaldi’s “Four Seasons” because they could not process music and body movements at the same time. The neurological process of cognition of sound and visual data without an interception made impossible it for my SAC students to understand the emotional acting by Mr. R and at the same time perceive the language of music.
Om Patil and Meghali Kaple describe autism as a “neurodevelopmental condition” with unusual sensory processing (Patil, Om and Kaple, Meghali, 2023). Scientists stated that people with ASD experience difficulties with communication and perceiving emotions within the social interaction.
Understanding emotions is fundamental in our everyday life. Setting a goal to help my SAC students to transition to adulthood and become independent citizens, I decided to re-do my lesson plan with the same CA content core standard “Expressive Intent of Music” yet to use different delivery techniques.
First, I decided to utilize music as a background. I have observed that my SAC students pay attention to animated characters of the songs (“YouTube” collection of children songs) more than they perceive the plain music with lyrics. The optical stimuli of ASD children activates one part of the brain to focus on the moving objects, and in this case, it is an animated character. However, other stimuli that helps to perceive sounds in harmony with the moving objects, remains sleepy. So, in my lesson plan I switched the roles of “moving objects” and music. I made the music to become #1 when I introduced to my students the “sounded shapes”.
One of my colleagues, the school psychologist, said one day that she used a technique that helped one of her IEP students to improve his behavior in the classroom. She asked this student to trace images in the coloring pages when this student was sent to her office due to his behavior. The student remained in her office until his “sloppy” tracing would turn into almost precise lining. Then, the student was dismissed to complete his classroom assignments without any interruptions.
Because the majority of my ASD students struggled to recognize or express their emotions, tracing the shapes became the activity to stimulate “sad” and “happy” emotions.
It is believed that ASD can overlap with symptoms of alexithymia. “Alexithymia is defined as the inability to recognize or identify your own emotions. Individuals who have alexithymia have in common the inability to either
verbalize their emotions due to lack of awareness of the emotion, or possible confusion of emotional feelings.” ( (Deolinda, 2023).
For the “Emotions and Tracing the Shapes” activity, I used the shapes puzzle and asked all my students to take out one shape, for example a circle, from the puzzle and trace its contours using a plain piece of paper and pencil.
While my students were tracing the shape, I played the recording of “happy” music, such as “Blue Danube” Waltz by J. Strauss, as background music, and displayed the “Happy Face” emoji on the screen.
Then, with the second shape, for example, a triangle, I played the sad music recording of “The Swan” by Saint-Saens and the “Sad Face” emoji was displayed on the screen.
Both activities were no longer than 2.5 – 3 minutes (based on the time of the lesson plan). My students were able to trace and listen to music. In the end of the activity, I played the recording of the song, “If You’re Happy and You Know It” and I re- enhanced the “happy” and “sad” emotions with the exaggerated facials mimics and body gestures when I sang
the song without an accompaniment:
If you’re happy and you know it
Clap your hands
If you’re sad and you know it
Touch your nose.
Closer to the end of the school year, I noticed one of my nonverbal students, Joe, who kept withdrawing himself from any activities, suddenly began crying right after I played The Swan by Saint-Saens. At first, when the teachers’ aides and I noticed the tears on his cheeks, we thought he had some discomfort. Yet, Joe repeatedly kept crying every time after The Swan music had been played. Then, I puzzled out, in my opinion, the cause of Joe’s tears: through his tears, he expressed his feelings about the music.
Another interesting fact was with Clayton. I noticed that every time I sang the song If You’re Happy and You Know It, Clayton, the nonverbal student, grabbed a drum and played the instrument very loud, even though he remained passive for other activities in the class. In my opinion, through drumming, Clayton expressed his happy feelings.
How shapes, tracing, and music helped my students
First, why shapes? The studies conducted at different universities worldwide revealed that shapes can induce emotional responses. For example, the study conducted at the University of Rennes in France unveiled that children with ASD responded to the geometrical shapes more emotionally with smiles and vocalization than “neurotypical children.” (Belin, Laurine, Henry, Laurence, Destays, Mélanie, Hausberger, Martine, and Grandgeorge, Marine, 2017).
By seeking to develop the emotional responses to music through the geometrical shapes, I paid close attention at how my SAC students sensed the shapes in the puzzle. I noticed that the more they traced the shapes, the more they listened to the music. I may only predict that the visual stimuli together with tactile sense (touching the shape), and the fine motor skills (holding pencils and drawing the contours of the shape) activated another part of the brain – auditory sense.
Interestingly, a similar concept of involving two or three stimuli to “wake” up the “sleepy” neuron was done by the scientist Ebrahimi. In one study, Ebrahimi compared the effect of drawing and storytelling on sleepy quality in children with autism. According to the result, she recommended that more interventions should be implemented, especially the use of painting and storytelling in children with autism because it is inexpensive, effective, and practical in treating sleep disorders.” (Ivanova, 2021).
By playing music as a background and letting my students focus on drawing and spotting the shapes, I hoped that eventually the activation of certain stimuli in neurological system, in this case the fine-motor stimuli, optical stimuli and tactile stimuli would wake up the audio stimuli to emotionally respond to the played music.
The response from Clayton and Joe showed that background music can be an effective tool to increase emotional understanding in children with autism, which is crucial to their social interactions. (Katagiri, 2009).
Conclusion
The music, shapes and tracing activity described in this article was not set up to test or record any research data. I simply wanted my students to develop the skills that could help them in their near future. For example, the emotional response to music might help my students to develop social skills and the recognition of shapes would develop spatial sense that can be practical if my students will seek a job in construction or in any furniture stores like Ikea to assemble parts of the furniture to earn money and claim their financial independency. This exercise showed that there are a lot of possibilities to help ASD students to gain the skills that they can use after graduation from the high school to become independent in their adulthood life.
References
Belin, Laurine, Henry, Laurence, Destays, Mélanie, Hausberger, Martine, and Grandgeorge, Marine. (2017, January 30). Simple Shapes Elicit Different Emotional Responses in Children with Autism Spectrum Disorder and Neurotypical Children and Adults. Retrieved from National Library of Medicine: https://www.ncbi.nlm.nih.gov/pmc/articles/ PMC5276997/
CASSELLA, C. (2023, March 4). Children With Autism 'See' This Optical Illusion in a Unique Way, Experiment Finds. Retrieved from ScienceAlert. com: https://www.sciencealert.com/children-with-autism-see-thisoptical-illusion-in-a-unique-way-experiment-finds
Creating—Anchor Standard 2: Organize and Develop Artistic Ideas and Work. (2019, January 9). Retrieved from California Department of Education: https://www.cde.ca.gov/be/st/ss/documents/ caartsstandards.pdf
Deolinda, A. R. (2023, September 28). A World Without Emotions: Alexithymia and Autism. Retrieved from Autism Parenting Magazine: https://www.autismparentingmagazine.com/alexithymia-autism/ Ivanova, V. (2021). Specifics in Children's Drawings with Autism. Journal of Intellectual Disability , 9 (4), 368-373.
Katagiri, J. (2009). The effect of background music and song texts on the emotional understanding of children with autism. Music Therapy , 46 (1), 15-31.
Music Glossary. (2019, January 9). Retrieved from California Department of Education: https://www.cde.ca.gov/be/st/ss/documents/ caartsstandards.pdf
Patil, Om and Kaple, Meghali. (2023, October 31). Sensory Processing Differences in Individuals With Autism Spectrum Disorder: A Narrative Review of Underlying Mechanisms and Sensory-Based Interventions. Retrieved from National Library of Medicine: https://www.ncbi.nlm. nih.gov/pmc/articles/PMC10687592/ - :~:text=ASD is characterized by abnormal,pattern-related visual stress'.
Social Difficulties in Autism Spectrum Disorder. (2024, May 23). Retrieved from The University of Kansas: https://educationonline.ku.edu/ community/social-difficulties-in-autism-spectrum-disorder
Acknowledgement
The author would like to thank Maria Pacino, Professor and Chair, Department of Library and Information Studies, at Azusa Pacific University, and Connie Prince at Los Angeles Public Library for their support and inspiration
Aygul Hecht, BS, PhD is currently a public-school music teacher at Lancaster Unified School District and a part-time librarian at one of the Los Angeles Public Library branches. Aygul received a BS in Music from Almaty State Conservatory (Kazakhstan) and a PhD in Philosophy and Music from Moscow State University, Russia.
Properly Gifting to Individuals with Disabilities for a Lifetime of Support
By Ryan F. Platt, MBA, ChFC, ChSNC, CFBS
Gifting to someone with a disability can be challenging. It must be done with careful intention to ensure that it does not negatively impact the individual’s current government benefits or any benefits they may be eligible for in the future.
Many families, grandparents, aunts and uncles, friends, or other family members may want to provide financial support for a loved one with a diagnosis. Answering a series of questions is crucial to understanding the best way to provide a gift. For instance:
• How old was the individual with a disability when they were first diagnosed? Was it before they turned 26?
• Does the individual currently receive any government benefits such as SSI (Supplemental Security Income), Medicaid, or any Medicaid waivers?
• If the individual does not currently receive government benefits, do they plan on accessing them in the future?
• What is the amount of the gift?
• Will this be a one-time gift, or will it be an annual contribution?
For many individuals and families, government benefits will play a significant role in providing for lifetime support and services, so it is important to keep the ability to qualify intact. To do this, it is imperative to direct any gifts properly. If the individual is under age 26 or was diagnosed before age 26, an ABLE account will be an option to use. All the rules of ABLE must be carefully followed, including the maximum annual funding limit. In 2025, the annual maximum funding limit is $19,000. This means that to use the ABLE account,
the gift cannot be more than $19,000. If the gift is more than $19,000, then the ABLE account is not the right tool to use.
Another option is a Special Needs Trust. This unique legal tool can be funded at any time and with no annual contribution limit. You can use multiple funding tools within the trust, depending on your situation and your preference. There are also a number of items you should know about managing Special Needs Trusts before you decide on this as an option, especially how taxes work within a properly created Special Needs Trust.
A third option that grandparents (and parents) utilize is certain types of life insurance that can fund the trust with a lump sum payment in the future (through a death benefit) but also have a savings component that can be used for current needs. If designed and used properly, this tool can have tax advantages when owned by the Special Needs Trust.
A gift can be such a blessing, as long as it is carried out properly, but it can be quite a curse if done without forethought and planning.
The answers to the questions I listed above will clarify the best option for the money being gifted. A gift can be a blessing if it is carried out properly, but it can also be quite a curse if done without forethought and planning.
Contact a financial advisor who specializes in serving families with special needs for more information on how to prepare for the future. The team at A Special Needs Plan is driven by their purpose of Leading Families to Independence through an ongoing, multi-generational plan. We are passionate about families confidently moving forward.
Ryan F. Platt, MBA, ChFC, ChSNC, CFBS, is a registered representative of and offers securities, investment advisory, and financial planning through MML Investors Services, LLC, Member SIPC. Securities and investment advisory services are offered through qualified registered representatives of MML Investors Services, LLC, Member SIPC. A Special Needs Plan is not a subsidiary or affiliate of MML Investors Services, LLC, or its affiliated companies. This article is not a recommendation or endorsement of any products.
