EXCEPTIONAL NEEDS TODAY ISSUE 15 by ExceptionalNeedsToday

Exceptional Needs Issue 15

T O D AY

WAYS SCREENTIME MAY AFFECT SOCIAL SUCCESS

AN INNOVATIVE APPROACH TO SERVING CHILDREN WITH DISABILITIES

ADVOCATING FOR JUSTICE FOR ABUSE VICTIMS

POSITIVELY SUPPORTING SPECIAL NEEDS DISABILITY SUPPORT

AND JUSTICE

ec ia Iss l Aw ue ar ds

PREPARING FOR A LOVED ONE’S FUTURE WITH AUTISM

Exceptional Needs Today | Issue 15 | 1

POST-INCARCERATION

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

2. How much will that care cost and how are you going to pay for that care? 3. Do you have a special needs trust and do you know how much money you will need in it? How are you going to fund it? How are the funding instruments taxed when you die? 4. What government benefits are available to your child and how do you apply for them? 5. What is the Medicaid waiver and how do you apply for it? 6. How will you communicate your plan to family members?

www.ASpecialNeedsPlan.com Phone (704) 326-7910

2 | Exceptional Needs Today | Issue 15 offered through qualified registered representatives of MML Investors Services, LLC, Member Securities and investment advisory services SIPC. 4350 Congress Street, Suite 300, Charlotte, NC 28209. 704-557-9600. A Special Needs Plan is not a subsidiary or affiliate of MML Investors Services, LLC or its affiliated companies.

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Exceptional Needs Today | Issue 15 | 3

Co nt e n t s

January 2024, Issue 15

C O V ER STORIES 8

REBUILDING LIVES AND FUTURES POSITIVELY SUPPORTING PEOPLE WITH INTELLECTUAL AND DEVELOPMENTAL DISABILITIES POST-INCARCERATION

Haiku Haughton Discover how the Young Adult Institute extends its services to assist those in the exceptional needs community most at risk of reincarceration.

SAFETY GOALS WITH NICOLE

ADVOCATING FOR JUSTICE FOR ABUSE VICTIMS WHEN THERE IS A DISABILITY

Nicole Moehring Consider how the current government systems actively and passively work against the disabled population when reporting crime.

THE FRIENDSHIP & DATING DUO

TIME VAMPIRES: WAYS SCREENTIME MAY AFFECT SOCIAL SUCCESS

Jeremy and Ilana Hamburgh Recognize how technology can tempt users into prioritizing digital escapism over real, social experiences.

AN INNOVATIVE APPROACH TO SERVING CHILDREN WITH DISABILITIES

FINANCIAL FOCUS

Areva Martin, Esq. and Arshya Vahabzadeh, MD Consider how guideline interpretation for disability services has resulted in many underserved individuals and learn how a physician and advocate approach the issue.

WHAT HAPPENS WHEN YOU CAN NO LONGER ACT AS YOUR SPECIAL NEEDS CHILD’S PRIMARY CAREGIVER?

Ryan F. Platt, MBA, ChFC, ChSNC, CFBS Contemplate what should be prepared in advance to help a transition in primary caregiver status.

12 SHAPING OUR FUTURE STRENGTHENING SPECIAL NEEDS CAREGIVERS THROUGH EMPOWERMENT, ENGAGEMENT, & COMMUNITY

Rose Adams, OTD, OTR/L and Grace Muppidi, OTD Join two occupational therapists as they explain their methods for bolstering caregivers' engagement and social influence.

22 NAVIGATING LOVE AND CONNECTION: GROWING UP WITH A DAD ON THE SPECTRUM

Erica Holmes Dorr Discover how a daughter's understanding of communication and love was affected by growing up with a father on the autism spectrum.

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28 EXCEPTIONAL ADVICE FROM MESHELL ADVOCACY 101 FOR THE FOSTER PARENT WHEN THERE ARE DIFFERENT ABILITIES

Meshell Baylor, MHS Discover how foster parents can better prepare for taking in an exceptional needs child to provide an accepting and adaptable place to belong.

30 EXCEPTIONAL BOOKS 15-MINUTE FOCUS: REGULATION AND CO-REGULATION WORKBOOK: ACCESSIBLE NEUROSCIENCE AND CONNECTION STRATEGIES FOR THE CLASSROOM AND BEYOND

Explore regulation and co-regulation through the lenses of up-to-date research, sound strategies for implementation, vivid illustrations of each concept, and hands-on activities by Ginger Healy, MSW, LCSW.

31 HOW TO ASSIST THE GRIEVING PROCESS FOR YOUR CHILD WITH DIFFERENT ABILITIES Dr. Ronald I. Malcolm, EdD Learn nine methods of guiding and supporting an exceptional needs child through grief as a caregiver.

34 LIVING IN THE PRESENT WHILE PREPARING FOR A LOVED ONE’S FUTURE WITH AUTISM Marlene Ringler, PhD Join a mother as she considers how to support her autistic son beyond her passing despite a lack of support infrastructure for adults with autism.

38 KATE MAKES IT GREAT! GUIDING EXCEPTIONAL NEEDS CHILDREN THROUGH LANGUAGE HURDLES

Kate C. Wilde Find multiple ways to approach a language issue between you and your loved one through four different scenarios worldwide.

41 TEACHING BODY BOUNDARIES AND APPROPRIATE TOUCH TO OUR MOST VULNERABLE

Karen Kaplan, MS Remember to repeatedly teach children the differences between safe and dangerous touch in understandable ways and how to firmly deny consent.

43 ALL THINGS OT WAYS VISUAL EFFICIENCY SKILLS ARE VITAL TO MOTOR SKILLS AND LEARNING

Laura A. Ryan, OT, OTR, OTD Understand the importance of visual efficiency and how testing your loved one with exceptional needs can reveal relevant information.

46 EMBRACING MY JOURNEY: NAVIGATING HIGHER EDUCATION WITH AUTISM

Sydney Holmes, MA Read a letter from an autistic college graduate to her past self and other neurodivergent individuals who may feel lost to see how she embraced her identity.

48 COULD MORE SLEEP BE THE ANSWER TO INCREASING ACADEMIC SUCCESS FOR ALL ABILITIES?

Carli Haskovec, MA, EdS Reconsider the status quo regarding getting enough sleep—recent studies indicate that lack of sleep may have more of a detrimental effect on learning than previously thought.

52 NEURODIVERGENT ACCOMMODATIONS: HOW DO YOU ASK FOR HELP? Jagmeet Sangha Uncover the benefits of implementing general accommodations in your environment.

54 TWO GOOD YEARS: CELEBRATING OUR PROACTIVE EXCEPTIONAL EDUCATION DIRECTOR

Melanie K. Milicevic Follow a mom’s decade-long experience with two special education directors and how their openness to parental input affected her son’s growth.

58 WAYS BEING A SPECIAL NEEDS SIBLING ENHANCED MY LIFE AND SUCCESS

Siris Raquel Rivas-Verdejo, M.A. CCC-SLP/LD Get to know a remarkable family through its eldest daughter, who shares how her unique siblinghood was turned to her advantage.

64 TACKLING THE SPECIAL NEEDS PARENTING JOURNEY

Hina Kalhoro Follow a life coach's multi-faceted guide to raising a child with exceptional needs.

67 INVISIBLE DISABILITY

Carmen A. Brown Appreciate a heartfelt poem about something the speaker shares and how it affects their family

68 NATURE NOTES FIRST-DAY HIKE TO ENRICH DIFFERENTLY ABLED FAMILIES

Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA Begin a new tradition to connect with nature and your loved ones by walking together in a park or garden at the beginning of the year.

72 HEALTHY PARENTING WHEN RAISING DIFFERENTLY ABLED CHILDREN

Priya Pasumarthy, MS Reconstruct yourself when knocked down by the mental and emotional strain of difficult parenting to become a better mother and recover your joy..

76 WAYS VOCATIONAL REHABILITATION CAN HELP YOU REACH YOUR GOALS

Seva Reilly Learn about the purpose and availability of Vocational Rehabilitation (VR), a state-level program intended to aid job seekers with exceptional needs to find and maintain competitive employment.

80 CHEERS TO OUR EXCEPTIONAL CONTRIBUTORS AND BOOK AUTHORS OF 2023

Amy KD Tobik Celebrate this year’s top writers and appreciate the wide range of perspectives and expertise that helps Exceptional Needs Today thrive.

EXCEPTIONAL NEEDS TODAY

Exceptional Needs T O D AY

Our mission is to educate, support, and energize families, caregivers, educators, and professionals while preparing all families for a healthy future. exceptionalneedstoday.com Founder/Publisher Amy KD Tobik, BA Lone Heron Publishing, LLC Magazine Staff Editor-in-Chief: Amy KD Tobik, BA Editorial Assistant: Margo Marie McManus, BS Copyeditor: Emily Ansell Elfer, BA Digital Marketing Coordinator & Social Media: Dione Sabella, MS Graphic Designer: Annie Rutherford, BA Professional Consultants Chris Abildgaard, LPC, NCC, NCSP Debra Moore, PhD Brett J. Novick, MS, LMFT, CSSW Annette Nuñez, PhD, LMFT Amy Wagenfeld, PhD, OTRL, SCEM, EDAC, FAOTA Contact editor@exceptionalneedstoday.com advertising@exceptionalneedstoday.com submissions@exceptionalneedstoday.com editorial@exceptionalneedstoday.com

Exceptional Needs Today is published 4 times a year and distributed digitally to readers for free by Lone Heron Publishing. Special editions are also published throughout the year. Print copies are available upon request for a fee.

Disclaimer: Advertised businesses and products are not endorsed or guaranteed by Exceptional Needs Today, it’s writers, or employees. Always follow medical advice from your physician.

EDITOR’S LETTER

From the Editor’s Desk

eople often ask me, “Who does Exceptional Needs Today serve?” I’m proud to exclaim, “EVERYONE.”

Our publication is honored to support self-advocates, doctors, educators, families, and caregivers. Our topics encompass autism, intellectual and developmental disabilities, orthopedic impairment, speech/language impairment, deaf/ blindness, and mental health. Our mission ALSO includes positively influencing a world not yet engaged in the different abilities community—people who perhaps don’t understand meltdowns or apraxia, who have not yet considered the need for accommodations at schools, stores, parks, public transportation, the workplace, and restaurants. We want our readers to share our website with friends, neighbors, extended family, and people at the office and playground so we can connect as a community. Promoting public awareness and mobilizing support for the rights and well-being of people of all abilities is vital. I continuously hear about children and adults with different abilities facing discrimination. In an effort to highlight unfairness and advocate for change, this issue features several articles surrounding disability rights and justice. Exceptional Needs Today columnist Nicole Moehring says she witnessed her son, Evan, who is autistic, face discrimination and have his rights taken away following sexual abuse as a young boy. According to Nicole, the rate of violent victimization against persons with disabilities is nearly four times higher than for persons without disabilities. Be sure to read Advocating for Justice for Abuse Victims When There is a Disability, as the founder of the nonprofit Voices of Change considers how government systems actively and passively don’t support our disabled population. According to civil rights attorney, author, and special needs advocate Areva Martin, Esq., and Arshya Vahabzadeh, MD, a recognized leader in psychiatry, innovation, and medical leadership, the guideline interpretation for disability services has disappointingly resulted in underserved individuals. As

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they explain in An Innovative Approach to Serving Children with Disabilities, when guidelines to de-institutionalize services for people with disabilities were created more than 40 years ago, they specified services to be integrated “in the child’s natural environment.” Though perhaps well-intended language at the time, we understand a child’s home isn’t always the ideal space to receive support, so this phrasing potentially negatively impacts the very children who need services most. Read about the Special Needs Network’s innovative and comprehensive new Center for Autism and Developmental Disabilities (CADD), where families can experience a warm, natural environment needed to foster connection and nurture growth. According to the Survey of Prison Inmates, 2016 Disabilities Reported by Prisoners published by the U.S. Department of Justice/Office of Justice Programs Bureau of Justice Statistics, nearly 40% of state prisoners and 29% of federal prisoners reported disabilities. Can you imagine the overwhelming challenges of transitioning to a new life outside incarceration when there are different abilities? Fortunately for Alicia Ruffa, who spent two years at a detention center, the Young Adult Institute (YAI) stepped in with enormous support upon her release. The YAI’s intellectual and/or developmental disability (I/DD) community is vital in ensuring people are provided the proper care and placed in a setting where they can thrive and grow. Read Haiku Haughton’s informative piece, Rebuilding Lives and Futures: Positively Supporting People with Intellectual and Developmental Disabilities Post-Incarceration, to learn how the institute extends its services to assist those in the community who need them most and hear from Alicia, who has benefitted from the program. Fostering community voices and perspectives is paramount for Exceptional Needs Today. In addition to the valuable articles written by educators, physicians, and specialists, we all benefit from those penned by self-advocates, parents, children, grandparents, siblings, etc. We grow when we hear new voices.

EDITOR’S LETTER We are thrilled to highlight the voice of Sydney Holmes, MA, who was diagnosed with Asperger’s syndrome at six years old and reassessed in her teens for Autism 1. Today, as a college graduate with a fantastic career, Sydney has composed a letter to her past self and other neurodivergent individuals who may sometimes feel a bit lost. Check out her insightful piece, Embracing My Journey: Navigating Higher Education with Autism. You also don’t want to miss Ways Being a Special Needs Sibling Enhanced My Life and Success as author Siris Raquel Rivas-Verdejo, M.A. CCC-SLP/LD, shares how her role as a sibling to a woman with spina bifida and a man with a diaphragmatic hernia, a heart murmur, and bilateral sensorineural hearing loss has bettered her journey. In her piece, Navigating Love and Connection: Growing Up With A Dad on the Spectrum, college student Erica Holmes Dorr reveals how her understanding of communication and love was affected growing up with a father with a diagnosis. Erica’s words are both insightful and loving.

While Preparing for a Loved One’s Future with Autism. As Marlene shares in her piece, ensuring adults with different abilities can age well and comfortably with the dignity and love a caring family and community may provide is imperative. It’s always a privilege to work closely with so many inspirational people each day. Exceptional Needs Today was honored to receive the Gold Award from Mom’s Choice Awards several years ago, and in turn, we select top writers and books each year for recognition. Be sure to check out our impressive winners within this issue. Let’s continue to support and guide one another with kindness. Best,

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

Marlene Ringler, PhD, the mother of a 51-year-old son with autism, generously shares her perspective in Living in the Present

PLEASE JOIN OUR EXCEPTIONAL COMMUNITY

Rebuilding Lives and Futures Positively Supporting People with Intellectual and Developmental Disabilities

Post-Incarceration By Haiku Haughton

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EXCEPTIONAL ADVOCATE

ife hasn’t always been easy for 43-year-old Alicia Ruffa, who found herself at the Porterville Detention Center (PDC) in CA for two years. Transitioning back to life outside incarceration can be challenging, especially when there are different abilities. Fortunately for Alicia, the Young Adult Institute (YAI) stepped in with extraordinary support. YAI provided crisis training for staff while working with Alicia to develop problem-solving skills and coping mechanisms to help better manage emotions as she adapts to a new life. Alicia had the opportunity to transition to a group home in Visalia, CA, with three other residents in 2022. Initially, she had difficulty adjusting to her new surroundings and found it challenging to follow the rules. She would hit staff, break things, and try to harm herself to the point where the team couldn’t handle her without emergency services. But, Alicia’s situation has dramatically improved with the help of the YAI and crisis intervention provided for both her and the home staff. YAI takes a unique approach to see beyond disability while providing innovative services for the intellectual and/or developmental disability (I/DD) community. Among the many benefits they provide, YAI’s Intensive Individualized Transition Services (IITS) has been highly instrumental to the I/DD community and individuals. Common diagnoses of I/DD, such as autism and Down syndrome, are common in the criminal justice system; this is where IITS steps in and makes a difference. IITS provides clinical case management to I/DD individuals with complex behavioral needs and is involved with the justice system. YAI is the only IITS provider in all of California, providing this crucial service to people with a high risk of being reincarcerated. Programs such as IITS are essential because they focus on why a person is struggling and on externalizing behaviors while ensuring appropriate treatment and support. Recently, the IITS has been working with the PDC to bring their services to those who need them most by helping people transition from an institutional setting to community living. According to IITS Clinical Director Sharon Cyrus Savary, it’s essential to start supporting people within 60-90 days before a person is released. “During the transition phase, we draft an IITS Plan,” she explains. These comprehensive clinical documents provide a good clinical impression to ensure that all biopsychosocial and developmental needs are being addressed in the community. “These assessments are completed over 30 days, given the executive function challenges and complex mental health needs of many of the people we support,” Sharon says. Once risks and needs are identified, they work with the community caregivers and community partners to form linkages to help access community resources and treatment goals. Sharon says this process aids individuals and their support systems. “The coordinator program director and I also meet with the person several times to develop rapport and build a

therapeutic alliance. A strong therapeutic alliance can help the people we support become more self-aware and understand how we will support them. It promotes self-exploration and helps with awareness of their thoughts, feelings, and motivations,” she said. Together, Sharon, the clinical team, the psychologist, and the medical director prepare several pieces of training, including executive function, trauma-informed care, positive behavior support, and positive psychology for the caregivers to help increase their capacity to successfully support people with complex biopsychosocial vulnerabilities. IITS works with the community to gain access to quality support that helps achieve self-determination for people with intellectual and developmental disabilities. “IITS also promotes quality services to further treatment/recovery for individuals with complex mental illness/substance use disorders,” Sharon said. “IITS facilitates communication and collaboration across developmental disability, mental health, community, and family networks to improve community support, connections, and treatment outcomes. The IITS team does not replace elements of the current service continuum but works in conjunction with parts of the person’s system.” Exceptional Needs Today | Issue 15 | 9

EXCEPTIONAL ADVOCATE

“YAI has been dedicated to providing innovative services for the intellectual and/or developmental disability (I/DD) community since its founding in 1957, at a time when institutional living was the norm for people with I/DD,” Sharon adds. “Today, YAI has a team of over 4,000 employees and supports over 20,000 people in the I/DD community in NY and CA. YAI is committed to seeing beyond disability, providing opportunities for people to live, love, work, and learn in their communities.” “The people we support are far more successful in integrating into the community with comprehensive support systems like IITS,” Sharon says. “Outcomes over the past year include 100% medication adherence, reduction in polypharmacy (more than one psychotropic medical), increased diagnostic clarity for both physical and mental health diagnoses, and greater meaning in life through community activities and involvement. Empowering the people we support to reach their goals remains at the heart of our organization.” The YAI’s IITS is vital in ensuring people are provided the proper care and placed in a setting where they can thrive and grow. Facilitating communication and collaboration between the different communities and families of the people they aid is why

Empowering the people we support to reach their goals remains at the heart of our organization. IITS has significantly impacted the lives of many. Alicia says it felt good when she left PDC and began working with YAI and living in a group home. “YAI helped me a lot with finger breathing, and they have helped me walk more. Finger breathing is a technique utilized by Bruce ‘Perry’s Three Rs crisis intervention techniques (Regulate, Relate, then Reason).” She has also learned to use therapeutic fidget toys to help her calm down when she feels anxious while learning to manage her behaviors. Alicia has recently been in contact with family members as she rebuilds her life. “I feel good, and I feel happy that YAI helped me to get back onto the path I want to be on,” says Alicia.

Haiku Haughton is a University of Central Florida student obtaining a Bachelor of Arts degree in Writing & Rhetoric and a Certificate in Editing and Publishing. Born in Montego Bay, Jamaica, with an English teacher for a mother, Haiku was immersed in writing at a young age, and that same immersion continues today. Whenever his eyes aren’t plastered to the monitor of his desktop, Haiku directs his time towards his other passions, which include archery, art design/analysis, nature walks, and reading books on various topics. Haiku serves Exceptional Needs Today as a Content Writer and Social Media Editor.

10 | Exceptional Needs Today | Issue 15

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PARENTAL SUPPORT

SHAPING OUR FUTURE Strengthening Caregivers Through Empowerment, Engagement, and Community By Rose Adams, OTD, OTR/L and Grace Muppidi, OTD

Dear parents, Have you ever found yourself in a situation where decisions were made about and for your child without your input or knowledge? Have you ever sought relevant training that is specific to your needs? How often have you felt supported in your child’s educational journey? If any of these questions sparked something in your mind, this article is for you. We are two colleagues, friends, and occupational therapy practitioners passionate about working with children and supporting their caregivers. Read on to see how we are helping give the power back to you. We hope you will feel empowered by the end of the article.

Defining empowerment We define empowerment as recognizing the strengths of parents and caregivers during service delivery or their child’s educational journey. We think of empowerment as being in a position where individuals feel comfortable and free to express their needs and exercise their rights. Key components of empowerment include acquiring knowledge, having access to resources, information, and services needed to make informed decisions, and active and reciprocal participation (Golubović et al., 2021; Kalleson et al., 2020; McCrossin & Lach, 2023). In other words, being in a position where all your resources (internal and external) are considered and appreciated when supporting you and your child with exceptional needs. This is what we call the Power Seat.

The Power Seat In a school-based setting, for example, the parent or caregiv-

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er is considered the expert or most knowledgeable person on a multidisciplinary team. How often have you felt like you were in a Power Seat or expert position? How often have you felt empowered during a meeting concerning your child? If you answered, “Not often,” let’s talk about it. The Power Seat represents a collaborative process where the caregiver is a key member in the decisions, direction, and processes that are designed to support their child at home, school, and in community settings (Kalleson et al., 2020; McCrossin & Lach, 2023). If you are a healthcare professional, how often have you promoted empowerment among caregivers of children with disabilities? If you answered, “Not often enough,” read on. Engagement is a two-way street. Healthcare professionals, including occupational, physical, and speech/language practitioners, are responsible for involving and engaging caregivers in their children’s therapy process.

Defining engagement We define engagement as being actively involved and participating in your child’s therapy experience. Engagement in occupational therapy, for example, is seen as the caregiver’s deliberate efforts for the child and family to benefit from therapy services (D’Arrigo et al., 2020). How can caregivers, occupational therapy practitioners, or healthcare professionals encourage caregiver engagement? There are many ways, but remembering that your child’s care requires a team effort would be the first step (Golubović et al., 2021; Kalleson et al., 2020). Can you think of other ways? Engagement also begins with establishing a good rapport and therapeutic relationship. Once you’ve taken your Power Seat, effective communication coupled with a safe and supportive environment can help build a lasting connection; more importantly, the child will

PARENTAL SUPPORT benefit from this relationship. Now that you’re in the Power Seat let’s discuss how to secure your seat.

Securing your seat Securing your seat requires a willingness to get involved and stay involved. One way to get involved is to observe your child’s therapy sessions and how the therapist engages with them in therapeutic play. This would help to replicate the activities and strategies at home. Often, the time to observe and learn in each session is limited, and you may not have the same equipment and set-up as the therapy center in your home. Also, therapists may be unable to prioritize caregiver education needs over your child’s therapy plan in every session. So, you can request that the therapists teach these skills in workshops or webinars outside the therapy setting. For example, “How to teach fine motor skills at home” or “How to work on sensory regulation at home.” Another example of involvement is connecting with other parents at your school or on social media platforms. Share your thoughts and your strengths. Create a community of support. Not feeling brave enough? Not sure if your ideas will go anywhere? Do it anyway!

Doing it anyway—Rose’s way Recently, I was trying to acquire approval to provide preschool-related occupational therapy services through the Committee on Special Preschool Education (CPSE) at a local school district. I needed an identification number to enable my company to conduct necessary checks for employees providing the services. I may have called over ten offices, waited on hold for hours, sent numerous emails, and felt overwhelmed. I knew that my mission to support the needs of children was my priority, so I did it anyway. I persisted, cried, and tried again. When I continued to get the run-around, I prayed. I decided to pray for the person who would take my next call. I prayed that they would provide me with guidance or direction so that I would know how to move forward. One day, I got my answer. The person who picked up did not have the answers but was able to help me problem-solve and discover ways to find my answer. That was it! When we put our ideas out there, we may not immediately get the solutions we’re looking for, but I still encourage you to do it! Someone will listen, someone will guide you, and someone is waiting for you to do something.

Forming a community of support Who are we without our systems of support? We all need solace and encouragement from others who are walking along the same paths we are. Some may be further along the journey, and some just beginning. One example is group-based caregiver education workshops. Research states that these are more beneficial than individual clinic appointments in improving caregivers’ sense of self-competence (Collis et al., 2020). Caregivers need a supportive environment and safe space to share and support one another (Angelin et al.,2021; Collis et al., 2020; McCrossin & Lach, 2023). Can you think of places where these can occur? Establishing and maintaining caregiver support groups can help form a sense of community and support. Resilience is built when caregivers share their journeys and learn from each other. Not only will connecting with larger advocacy networks help you locate resources, but they can also help with advocating for necessary policy changes. Don’t you think you have the power to effect change at the policy level? You do! Check out the resource list at the end of the article for more information and examples of larger advocacy groups, websites, and support networks.

Empowered by Grace One of the caregivers I worked with in rural India inspired me to create my doctoral project’s education program. The caregiver showed engagement and interest through scheduling the therapy sessions, note-taking, asking questions during the sessions, and following up with the home therapy program. Her innovative solutions to create therapeutic activities for her child at home with little to no resources during the COVID-19 lockdown in India were awe-inspiring. In her little free time, she enjoys making small video montages of her pictures on Exceptional Needs Today | Issue 15 | 13

PARENTAL SUPPORT Instagram. In our session, I discussed her creative interests and how she could incorporate her creativity into sharing her journey with other caregivers on a similar path. She then created an Instagram account where she is working towards posting her home therapy program activity modifications with the resources available in the small town where she lives. It can be helpful to share tips and hacks. As a caregiver or healthcare professional, you can find some examples under resources if you are thinking about sharing your experience with a broader audience on social media.

Staying empowered Empowering caregivers begins with providing space for them to have a say in their child’s care (Power Seat). It also requires facilitating and providing opportunities for caregivers to be engaged and involved in the therapy process. Caregivers need support, as everyone does. Creating a community of support is one way to share lived experiences, gain knowledge, and advocate for your child’s needs. We hope you are now feeling empowered! We recognize that caregiving may be overwhelming at times. Here is a positive affirmation and acronym we created to help you start your day: I am…Effective, Mindful, Powerful, Optimistic, Wise, Engaging, and Resilient. I am EMPOWERED. References Angelin, C.S., Sugi, S., & Rajendran, K. (2021). Occupational performance coaching for mothers of children with disabilities in India. Canadian Journal of Occupational Therapy 88(1), 38–47. https://doi. org/10.1177/0008417420972868

Collis, D., Kennedy‐Behr, A., & Kearney, L. (2020). Supporting parents of children aged 2–13 with toileting difficulties: Group-based workshops versus individual appointments. Australian Occupational Therapy Journal, 67(2), 131–141. https://doi.org/10.1111/1440-1630.12631 D’Arrigo, R., Copley, J. A., Poulsen, A. A., & Ziviani, J. (2020). Parent engagement and disengagement in pediatric settings: an occupational therapy perspective. Disability and Rehabilitation, 42(20), 2882–2893. https://doi.org/10.1080/09638288.2019.1574913 Golubović, Š., Milutinović, D., Ilić, S., & Đorđević, M. (2021). Empowerment practice in families whose child has a developmental disability in the Serbian context. Journal of Pediatric Nursing, 57, e15–e22. https://doi. org/10.1016/j.pedn.2020.09.010 Kalleson, R., Jahnsen, R., & Østensjø, S. (2020). Empowerment in families raising a child with cerebral palsy during early childhood: Associations with child, family, and service characteristics. Child: Care, Health and Development, 46(1), 19–27. https://doi.org/10.1111/cch.12716 McCrossin, J., & Lach, L. (2023). Parent-to-parent support for childhood neurodisability: A qualitative analysis and proposed model of peer support and family resilience. Child: Care Health and Development, 49(3), 544–554. https://doi.org/10.1111/cch.13069

Resources Political advocacy by parents of children with special needs: Advocacy Group in New York’s Hudson Valley Region Hudson Valley Special Needs Advocacy Group. Support for Families in the Bay Area, California Affirming, parent-led support for families of children with disabilities throughout the Bay Area, California. Organizations and resources for children with special needs How to start your own online support group for parents How to join a Facebook group

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 participate 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. 🌐 https://www.changinglivesot.com LINKEDIN linkedin.com/in/rose-adams-otd-otr-l-5068b316 Grace Muppidi, OTD, is an occupational therapist with clinical experience in the field of pediatrics. She spent the past three years of her career doing her doctorate in occupational therapy, all while living and working in rural India. Dr. Muppidi has primarily worked in a community-based setting with neurodivergent children and children with multiple disabilities. For her doctoral project at Boston University, she developed an education program for caregivers of children with disabilities called the Caregiver Resilience Education (Ca.R.E.) program. As she is preparing to practice as a clinician in the Bay Area, California, she is currently working towards piloting her program in rural India. Dr. Muppidi is one of the winners of the Standing for Research in Diversity, Inclusion, and Equity (STRIDE) grant, 2023, by the American Occupational Therapy Foundation (AOTF), which is funding her research. When not in front of her computer, she enjoys immersing herself in nature, creative writing, photography, and exploring local restaurants and their tasty cuisine! INSTAGRAM @thegemzone • @how2OT101

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✉ gemuppidi@gmail.com; • how2ot101@gmail.com

EDITOR’S LETTER

SPRINGBROOK CREATIVE AD

Exceptional Needs Today | Issue 15 | 15

SAFETY GOALS WITH

NICOLE

REDUCING THE RISK OF ABUSE WITH CHILDREN WITH DISABILITY

Advocating for Justice for Abuse Victims When There is A Disability By Nicole Moehring "I WAS ABUSED BY SOMEONE I KNEW AND TRUSTED. I WAS THREATENED BY THE PERPETRATOR IF I EVER TOLD ANYONE THAT, WE WOULD BOTH BE IN BIG TROUBLE. I FINALLY WAS BRAVE ENOUGH AND TOLD MY MOM. SHE BELIEVED ME AND REPORTED IT. I TOLD THE TRUTH. BUT THE AUTHORITIES WHO WERE SUPPOSED TO PROTECT ME FAILED ME. BECAUSE I HAVE A DISABILITY, I WAS TREATED DIFFERENTLY, AND I WASN'T TAKEN SERIOUSLY." A STATEMENT SAID, IN SO MANY WORDS, BY MY SON, EVAN.

ccording to The Arc's National Center on Criminal Justice and Disability, studies indicate that between one and three percent of Americans have an intellectual disability. The most common diagnoses associated with intellectual disability include autism, Down syndrome, Fragile X syndrome, and Fetal Alcohol Spectrum Disorder (FASD). Children with disabilities are thought to have a substantially greater risk of being victims of violence than their non-disabled peers (Jones). Individuals with disabilities are four to ten times more likely to be abused than someone without a disability. Abusing children with disabilities is a systemic issue. The United States Department of Justice reports that as many as one out of three girls and one out of five boys will be sexually abused by the time they're 18 years old; this rate is even higher among children with disabilities. In 2019, the Bureau of Justice Statistics reported that the rate of violent victimization against persons with disabilities was nearly four times higher than the rate for persons without disabilities (Harrell, 2021). Often, the perpetrator is the child's primary care source, a family member, or someone the family or child knows. When children with disabilities endure abuse, exploitation, neglect,

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or violence, they may have lasting effects of trauma. It doesn't necessarily subside once they are in a safe place. Because of a lack of education, children often have limited knowledge of their rights. Children with disabilities rely on adults to advocate for them. As their primary advocates, it is an adult's responsibility to protect children! Adults must begin by educating themselves and then educating their children. However, because children with disabilities learn with repetition, it must be an ongoing conversation. Child abuse cases require a multidisciplinary team (MDT): a group of professionals providing different services for an individual. For successful intervention to occur, all team members must know current Federal, State, and local laws and have training in their respective fields. They must also understand each role and responsibilities and how to communicate and coordinate effectively. All members of the MDT are extremely important. Many law enforcement agencies and court systems are currently not trained or equipped to handle abuse cases of a child with a disability, making it difficult for a case with a child who has a disability to access the justice system or be tried in court. The road to justice and healing is exceptionally long. It's even longer for an individual with a disability. Unfortunately, many people give up their fight. Justice can be very difficult and

defeating. You must be persistent! Perpetrators need to be held accountable for their heinous crimes. Many states only offer basic training for working with individuals with disabilities for law enforcement and require no additional training. Ongoing training would allow law enforcement to be educated on various disabilities and how to interact with individuals with disabilities. Without ongoing training, untrained law enforcement or other professionals may not believe an individual with a disability when they disclose abuse or would be capable of assisting with an abuse investigation. With proper training, law enforcement could better understand individuals with disabilities. This would enable them to take the necessary steps for investigations and hopefully solve and prosecute abuse cases.

Often, the perpetrator is the child's primary care source, a family member, or someone the family or child knows. In addition to law enforcement needing more training and education for the abuse of individuals with disabilities, prosecutors and judges also require this training. In my experience, the prosecutor assigned to my son's case was not knowledgeable on how to proceed with a case such as my son's and discounted his allegations and credibility. Between the global epidemic of abuse of individuals with disabilities, the stigma associated with discussing the subject of abuse, the underreported numbers of cases, limited availability of training for law enforcement, and not making additional training mandatory for law enforcement, we will only continue to see the numbers of abuse cases amongst individuals with disabilities rise.

References Harrell, E. (2021, November). Crime Against Persons with Disabilities, 2009 – 2019 – Statistical Tables. Bureau of Justice Statistics. https://bjs.ojp. gov/library/publications/crime-against-persons-disabilities-2009-2019statistical-tables Jones L, Bellis MA, Wood S, Hughes K, McCoy E, Eckley L, Bates G, Mikton C, Shakespeare T, Officer A. Prevalence and risk of violence against children with disabilities: a systematic review and meta-analysis of observational studies. Lancet. 2012 Sep 8;380(9845):899-907. doi: 10.1016/S01406736(12)60692-8. Epub 2012 Jul 12. PMID: 22795511.

Nicole Moehring's daughter and son, who has Fragile X Syndrome and autism, were both victims of sexual abuse. As a mother suffering through this unbelievable nightmare, Nicole witnessed extreme differences in the justice system regarding how her daughter was believed and treated well when her son was not. She also quickly 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 national organization piloting groundbreaking programs in Ohio. VOC18 is in the process of developing preventative education programs for children with disabilities while empowering parents and guardians. By sharing their lived experiences and through collaborations with other individuals, mental health professionals, law enforcement, and organizations, they are building a foundation of advocacy, abuse awareness, resources, and support for children with disabilities. 🌐 https://www.voicesofchange2018.org SQUARE-FACEBOOK https://www.facebook.com/voicesofchange2018/ LINKEDIN https://www.linkedin.com/company/voices-of-change-2018/ PINTEREST-SQUARE www.pinterest.com/voicesofchange2018/_created/ ✉ info@voicesofchange2018.com Exceptional Needs Today | Issue 15 | 17

THE FRIENDSHIP & DATING DUO

Time Vampires: Ways Screentime May Affect Social Success

By Jeremy and Ilana Hamburgh IT ISN'T UNUSUAL FOR A PARENT TO TELL US THEIR AUTISTIC OR NEURODIVERGENT CHILD PLAYS VIDEO GAMES OR WATCHES TELEVISION FOR UPWARDS OF FIVE HOURS A DAY. IN FACT, WE'VE EVEN HAD A FEW PARENTS TELL US—AND THEIR YOUNG ADULTS VERIFY—THAT THEY ARE STARING AT A SCREEN FOR 12 HOURS A DAY OR MORE.

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SKILLS FOR LIFE

e live in a society where most people have a smartphone in their pocket—a mobile supercomputer by almost any definition. Most homes are equipped with high-definition televisions, sometimes in every room of the house. Many people have massive computer monitors, and often more than one. And let's not forget all the laptops, iPads, and handheld gaming devices out there. We'll be the first to admit that our household has two laptops, two smartphones, two smart TVs, two iPads, and side-by-side computer monitors whose combined width would make a soaring eagle jealous. Devices are ubiquitous in this day and age. And they're essential to autistic and neurodivergent adults in many ways. But if you're worried they can hinder your social life, you're right because all those screens can be Time Vampires, which can be a big problem.

Devices are ubiquitous in this day and age. And they're important to autistic and neurodivergent adults in many ways. The importance of screens On the one hand, television, video games, and other screens can be essential to an autistic or neurodivergent adult's social success and mental health. They can also be a relaxing diversion in a day that's otherwise very stressful. After all, there's nothing more escapist than "losing yourself" in a great television show or immersing yourself in a virtual world. Sometimes, that temporary disconnect from "in real life" is precisely what you need to regain your calm and composure. There's also something to be said about the exposure television gives people to new ideas and ways of thinking. And video games can help people with planning, execution, and adaptation skills. For those reasons and more, this isn't an appeal to do away with screen time.

The ways screens put social success further away Screens become problematic when they stop being reasonable relaxation tools and start becoming Time Vampires. A Time Vampire is any activity that steals your time, particularly when it's at the expense of a true priority in your life.

Are you watching TV instead of attending your Dungeons and Dragons group? Your TV may have crossed over into the realm of being a Time Vampire. Are you playing video games instead of planning a hangout with friends? Your video games may have crossed over into the realm of being a Time Vampire. Ultimately, to have the social life you want, you need to be focused on three things:

1. Learning social strategies and building social skills 2. Using them in real-world social situations 3. Staying motivated so you can continue until you've succeeded

When screens turn into Time Vampires, all three of those things suffer. One of my mentors teaches that every free minute of the day provides you with a choice of how you want to use it: Stress relieving or dream achieving. While it may be relaxing, you can't learn real-world social strategies while you're playing Call of Duty. You can't build social skills while you're watching Game of Thrones. You can't practice conversation skills when you're sitting behind a wall of computer monitors. And you're certainly not going to be motivated to connect with new people when you don't feel like you're making meaningful progress. As my mentor says, there are growth opportunities every day, but they require you to make choices and tradeoffs. Exceptional Needs Today | Issue 15 | 19

SKILLS FOR LIFE

Balance is key to success The answer isn't completely disconnecting from the online world and sending your devices to the electronics recycler. That's overkill! In our Social Life 360 program, we work with our clients on their scheduling skills so everything in their lives has a time and a place on their calendars. One of the things that often surprises our clients is that playing video games, watching television, and just chilling out can have a prominent place in their daily schedule. But there must be time for learning social strategies, building social skills, and going out into the world to use them.

Having that balance between "me time" and "future me time" is crucial. It allows you to build a better future while respecting your brain wiring and the "downtime" it needs to function at its best. So ask yourself:

• •

How many hours a day am I staring at a screen?

•

Have my screens turned into Time Vampires that are putting my social success further away?

How many times a day am I learning social strategies and building my social skills, on average?

If screen time affects your social success, it's time to change your relationship with those Time Vampires and return to the life you deserve.

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 and 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.

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Exceptional Needs Today | Issue 15 | 21

EDITOR’S LETTER

PARENTAL SUPPORT

Navigating Love & Connection

Growing Up With A Dad on the Spectrum By Erica Holmes Dorr PARENT-CHILD RELATIONSHIPS ARE UNIQUE AND OFTEN SHAPED BY HOW INDIVIDUALS EXPRESS LOVE AND BUILD CONNECTIONS. HAVING A DAD ON THE AUTISM SPECTRUM HAS PROVIDED ME WITH A DIFFERENT PERSPECTIVE ON LOVE, COMMUNICATION, AND CONNECTION. WHILE UNCONVENTIONAL, THE JOURNEY OF UNDERSTANDING MY FATHER'S UNIQUE WAYS OF SHOWING AFFECTION HAS OPENED MY EYES TO THE BEAUTY OF EMBRACING DIFFERENCES AND FINDING GENUINE CONNECTION IN UNEXPECTED PLACES.

The unconventional language of love One valuable lesson I've learned is that how an autistic person expresses affection can differ significantly from societal norms. My mother's insight that people need to ask individuals on the autism spectrum how they prefer to give and receive love struck a chord with me. What may appear unconventional to others can be a profound display of care and affection. My Dad and I have unique ways of bonding that outsiders might find strange, but they hold a special place in my heart.

Embracing quirkiness One of my cherished memories is the goofy camaraderie my Dad and I share. We revel in our "weird" moments, often at the expense of my mom. The mutual enjoyment of creating odd sounds derived from scat music allows us to share laughter and silliness. Similarly, we indulge in inappropriate jokes that leave

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MY WORD my mom uncomfortable but create lasting memories. These unconventional bonding activities might not fit the mold of traditional quality time, yet they serve as our special connection.

The power of non-verbal communication Growing up, I came to understand that quality time doesn't always entail deep conversations. Instead, my Dad's unique form of connection revolves around non-verbal interactions. Our "secret door language" for saying goodnight exemplifies this. These non-verbal exchanges have taught me communication comes in many forms, each holding its own significance.

Love in unexpected gestures My Dad's frugality, although sometimes puzzling, takes on a different meaning in the context of affection. Whenever I'd request something seemingly random from the grocery list, he'd get it for me. This seemingly small act becomes a gesture of gift-giving and is a way he expresses his care. Even his sporadic texts expressing love while I'm at school reinforce his deep affection.

Shared activities as bonds As I journeyed through different stages of life, I noticed shifts in our relationship dynamics. The conversational gap that emerged as I grew older initially left me feeling disconnected. However, I've realized that my Dad's preference for silence is his way of fostering a connection. While he finds solace in quiet moments, my talkative nature has often interpreted this as disinterest. These disparities led to me internalizing doubts about his feelings for me.

Navigating miscommunication Our different ways of showing and interpreting affection highlighted a crucial point: understanding each other's perspectives is paramount. My Dad's view that quality time involves shared silence directly contrasts with my inclination for conversation. Our divergent communication styles resulted in misinterpretation, with me perceiving him as aloof. This term, commonly associated with individuals on the autism spectrum, highlighted the gap between our emotional experiences.

Bridging the gap Confronting this communication chasm paved the way for positive change. As a family, we've embarked on a journey to har-

monize our need for connection. Incorporating board games, movie nights, bike rides, and shared interests have become strategies to bridge our differences. These activities allow us to find common ground and create moments that transcend our contrasting communication styles.

Honoring individual preferences The path to strengthening connections with a neurodivergent parent requires honoring their preferences and ways of thinking. Recognizing my Dad thrives in silence as a bonding mechanism has expanded my understanding of love. While it may differ from my extroverted nature, respecting his comfort zone has become essential.

Growing up with a Dad on the autism spectrum has granted me a profound appreciation for the diversity of love languages and connection styles. Conclusion Growing up with a Dad on the autism spectrum has granted me a profound appreciation for the diversity of love languages and connection styles. Our unconventional bonding rituals have demonstrated that intimacy doesn't always require words; it can thrive in shared quirks and unique expressions. Embracing our differences, striving to understand each other's perspectives, and finding common ground have enabled us to build a stronger relationship. Through this journey, I've learned that love knows no bounds and that authentic connections are possible in the most unexpected ways. This article is based on Chapter 11 of the book by Dr. Stephanie C. Holmes, BCCC, published in 2023, called Embracing the Autism Spectrum: Finding Hope and Joy Navigating the NeuroDiverse Family System. You can hear more from Erica on this story in the podcast.

Erica Holmes Dorr is a student and soon-to-be graduate of Lee University with a double major in Spanish and TESOL (teaching English as a second language) with a minor in linguistics. Erica is passionate about her friends, family, and building community. She is focused on giving opportunities to people who are often overlooked and educating others on breaking poverty cycles through education and language resources. She has participated in translating a special edition of Exceptional Needs Today into Spanish as a translator and copy editor. She is recently married and excited to start her life with her new husband, Nicholas Dorr. Exceptional Needs Today | Issue 15 | 23

PARENTAL SUPPORT

An Innovative Approach to Serving Children with Disabilities By Areva Martin, Esq. and Arshya Vahabzadeh, MD

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EXCEPTIONAL ADVOCATE

ONE OF US IS A PARENT TO A CHILD WITH AUTISM, A LEADER IN ANTI-RACISM WORK, AND NEARLY 20 YEARS OF EXPERIENCE DEVELOPING LEADING SERVICES FOR FAMILIES OF CHILDREN WITH DISABILITIES, PARTICULARLY THOSE WHO HAVE BEEN UNDERSERVED AND IGNORED. THE OTHER IS A PHYSICIAN SPECIALIZING IN AUTISM SPECTRUM DISORDER (ASD) AND LEADING EXPERT IN THE WAYS PHYSICAL SPACES IMPACT SOCIAL COMMUNICATION, COGNITION, AND MOTIVATION. TOGETHER, WE HAVE WRESTLED WITH A MAJOR OBSTACLE TO SERVING FAMILIES BETTER—AND WE KNOW HOW TO OVERCOME IT.

ore than 40 years ago, in developing guidelines to de-institutionalize services for people with disabilities, advocates secured the addition of well-intended language requiring that services be delivered “in the child’s natural environment.” That directive has been interpreted by many—including funders—to mean the child’s home environment. And while the home environment can be an ideal space for serving the children of middle-class and wealthier families, narrowly defining a “natural environment” to mean home overlooks the realities of those most critically in need and ultimately excludes many of them. Los Angeles County alone has thousands of children needing services who live outside of middle or upper-middle-class circumstances. We witnessed this during the COVID-19 pandemic when children were expected to log into their online classrooms from home—many turned off their cameras, did not log in at all, and dropped out of school altogether. Allowing people without the lived experiences of so many families to define how we deliver services overlooks the reality of many families. Some children live in homes that house multiple family members in a very small space. Some children are in the custody of foster care, in the juvenile justice system, or a system or residing in shelters. Some live with adult caregivers who are sleeping after working an overnight shift. Some live in families struggling with mental health issues or substance abuse disorders. Some lack available tables, chairs, or a clean, comfortable, well-lit space where services can be effectively delivered. The limited definition of “natural environment” impacts providExceptional Needs Today | Issue 15 | 25

EXCEPTIONAL ADVOCATE ers, too. Some behavioral health specialists we’ve tried to hire express feeling unsafe entering a child’s home in the neighborhoods that need their services most. For organizations trying to hire staff, that presents major challenges. Finally—and in this moment, perhaps most critically—the limited “natural environment” definition excludes settings like Special Needs Network’s innovative and comprehensive new Center for Autism and Developmental Disabilities (CADD) on the MLK Hospital campus in the Watts/Willowbrook neighborhood.

can practice making bed and folding clothes, and a game room and music center for teens to connect socially and challenge themselves with activities from laying their own music beats to hosting a podcast. Serving families there means delivering research-informed best practices that can have an enormous impact on children who might otherwise be out of our reach—but only if the guidelines dictating our work will allow it.

The new “natural environment teaching” As experts in serving children with autism, we have visited countless clinical spaces. When collaborating on the design of the CADD, we envisioned a space where families could experience a warm, natural environment that would inspire connection and nurture growth while making a meaningful and measurable impact. It turns out scientific research reinforces that these welcoming spaces designed to model home and hearth are more conducive to positive outcomes. Not only that, but experts are already in practice creating these types of data-supported spaces. The designers at Plana Architects, who helped bring our vision to reality, take a research-informed approach that builds learning environments as places to foster curiosity and connection. Their Natural Environment Teaching (NET) designs integrate natural light and green spaces and treat every design decision including furnishings as a facilitator of learning and collaboration. NET helps children with autism in several ways. It enables children to grasp a range of concepts, such as sitting in different types of chairs in different environments; enables children with autism to learn and practice skills in multiple settings that are deliberately crafted to mirror real-world situations; and allows the therapy to focus on topics of interest to the child, increasing the likelihood of retaining key skills and behaviors. The NET-informed design at the CADD allows children to practice life skills in spaces like a light-filled kitchen where nutritious recipes are tested, a model bedroom where a young person

Areva Martin, Esq. is an award-winning civil rights attorney, sought-after on-air legal commentator, and nationally recognized children’s, women’s and disability rights advocate. Since her son Marty’s autism diagnosis, Areva has undertaken a broad range of initiatives to deliver culturally sensitive leading-edge interventions to historically marginalized populations. She is Founder and President of the Special Needs Network, one of California’s largest and most effective autism organizations. 🌐 Arevamartin.com

INSTAGRAM @arevamartin

Dr. Arshya Vahabzadeh, M.D., is a nationally recognized leader in psychiatry, innovation, and medical leadership. Dr. Vahabzadeh is deeply interested in neurodevelopmental disorders, including autism and schizophrenia. His research experience has encompassed several lines of study, including genetics, novel psychopharmacology and social cognition. He is a strong proponent of mental health education.

26 | Exceptional Needs Today | Issue 15

EDITOR’S LETTER

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.

COMMITTED TO PROVIDING THE HIGHEST LEVEL OF CARE YOU AND YOUR CHILD DESERVE THE HIGHEST LEVEL OF CARE FROM CHILD EXPERTS

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!

Call us today (909) 799‐3777

Email us at info@ieaace.com

More info www.autismassessment4ie.org Follow us

@inlandempireautismasssessmentcenter

ieautismassessment

Exceptional Needs Today | Issue 15 | 27

EXCEPTIONAL ADVICE FROM

MESHELL

Advocacy 101

For the Foster Parent When There Are Different Abilities By Meshell Baylor, MHS

"An aware parent loves all children he or she interacts with—for you are a caretaker for those moments in time." —Doc Childre

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FAMILY SUPPORT CARING FOR A CHILD IS AN UNCONDITIONAL ACT OF LOVE ANYONE CAN DO WHEN THEIR HEART IS IN THE RIGHT PLACE TO LOVE, NURTURE, AND PROVIDE SUPPORT FOR LOVE. WHEN WE USE THE TERM "EXCEPTIONAL NEEDS," IT IS TO IDENTIFY ALL UNIQUE CHILDREN WITH SPECIFIC NEEDS OF CARE. CHILDREN IN THE FOSTER CARE SYSTEM LOOK FOR THAT SPECIAL SOMEONE TO LOVE AND SUPPORT THEM. MANY CHILDREN HAVE BEEN DISPLACED AND REMOVED FROM THEIR HOME ENVIRONMENT DUE TO SEXUAL, PHYSICAL, AND NEGLECTED ABUSE.

ccording to Child Welfare, over 391,000 children and youth in foster care. Many times, these children are placed in foster homes or with reliable resource families to provide support in time of need.

Resource parents/foster parents take 12 or more training to become foster care parents. These fantastic families take in children of all ages with unique needs. Foster guardians become a shoulder for the child to lean on, advocates in times of crisis, and, at times, transition from being a foster parent to an adoptive parent. Children often require additional services such as individualized therapy, crisis intervention, and educational support. What can a foster parent do if they have an exceptional needs child in the home with unique needs? How do we help them prepare for the advocacy component of raising a special needs child? I contacted an online training company to evaluate their courses for parents but realized there was no component on special education services, advocacy, or intervention. Caring for a child's basic needs is one component of responsible parenting, but how do we teach them the transparency of special education rights? Thirty to 40% of children/youth in foster care have impairments, which consist of a more extensive combination of unique needs. Here are some helpful tips exceptional needs guardians should know in helping their children. Under the Individuals Disabilities Education Act (IDEA), Part C specifically points out that the right of a free appropriate public education governs children with developmental and physical disabilities. The provision also states the urgency for intervention services for underserved infants, toddlers, and children in foster care to be administered services of evaluations assessments and govern an Individual Family Service Plan. Under this law, children are given an Individual Education Plan (IEP) in school to help track, create goals, and assist children in their educational needs. Here are some connections that can help foster parents and children with different abilities:

•

Foster Care Agency Request assistance on resources for exceptional children.

•

Department of Children Family Services Social Worker Contact your child's advocate if there is a prior Individualized Family Service Plan (IFSP) or IEP in place that can assist you with finding a way to help them with intervention services.

•

Family Resource Center Find out if they have support services for exceptional children in foster care.

•

Local Developmental Disabilities Center Request information on intervention and various resources they can provide for the exceptional child.

•

Organizations and Resources Connect with agencies specializing in free classes on parent advocacy, such as learning how to navigate the special education system and finding resourceful information that benefits the child.

There is so much love to give your exceptional child, so please understand that advocacy takes time. Take time to get to know your child and allow them to be themselves. This journey for them has had its ups and downs, but the great part is that you, the resource/foster parent, get the opportunity to help them narrate a new positive journey in the chapter of their lives. There is a quote that says see the able, not the label; cherish your child with unconditional love, and the journey will be bigger and brighter. Resources Child Welfare Information Gateway Child Welfare and IDEA Part C—Child Welfare Information Gateway National Council On Disability Youth with Disabilities in the Foster Care System: Barriers to Success and Proposed Policy Solutions. NCD. gov (2008, February 26). Youth with disabilities in the foster care system: Barriers to success and proposed policy solutions. National Council on Disability. https://eric.ed.gov/?id=ED500321

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 within the Los Angeles area. She has a bachelor's degree in human services from Springfield College and a Master of Science in Human and Social Services. Meshell continues to volunteer and give within her local area while serving the special needs community. 🌐 http://meshellbaylor.wixsite.com/website Exceptional Needs Today | Issue 15 | 29

PARENTAL SUPPORT EXCEPTIONAL BOOKS

15-MINUTE FOCUS: REGULATION AND CO-REGULATION WORKBOOK: ACCESSIBLE NEUROSCIENCE AND CONNECTION STRATEGIES FOR THE CLASSROOM AND BEYOND

By Ginger Healy, MSW, LCSW LOOKING FOR TOOLS TO EXPAND EMOTIONAL STABILITY THROUGH BALANCED REGULATION AND CO-REGULATION?

ontinue the journey into co-regulation in the classroom and beyond with this powerhouse resource. Filled with content, prompts, activities, strategies, and reflections, the tools in this workbook will help you dive deeper into healing students’ nervous systems and rewiring their neural pathways for optimum performance in the classroom and throughout their lives! In this workbook, you'll discover: • Strategies to Nurture Neurodiversity • The Why, Who, When, What, and How of Teaching Students Basic Neuroscience • Co-Regulation Strategies, Including Mindfulness and Grounding • Brain Energizers and Brain Calmers • Restorative Practices • Ways to Widen Our Window of Tolerance • Activities to Soothe and Strengthen the Adult Brain • Crossover Strategies for the Home • Community Care Planning… and more! Explore regulation and co-regulation through the lenses of up-to-date research, sound strategies for implementation, vivid illustrations of each concept, and hands-on activities designed to reinforce the lessons in ways that will stay with the learners long after they leave the classroom.

TO PURCHASE: https://ncyi.org/product/15minregulation/ “The pocket-guide to Co-Regulation!” —Dr. Mona Delahooke, author of Beyond Behaviors and Brain-Body Parenting

Ginger Healy, MSW, LCSW, is a clinical social worker with almost 30 years of experience in the field. Ginger has worked as a child abuse investigator, hospital social worker, and school therapist. She spent 15 years as the social service supervisor at an international adoption agency and was able to travel to provide support for orphanages all over the world. This job continues to inform her work on attachment and trauma needs in children. She is currently the director of programs for the Attachment & Trauma Network where she co-anchors the podcast “Regulated and Relational” and speaks across the nation on trauma-informed schools, therapeutic parenting, and community engagement. Ginger is married and has four children who have been her greatest teachers about developmental trauma and special needs. She loves to travel and read.

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Additional book by author:

PARENTAL SUPPORT

How to Assist the Grieving Process for Your Child with Different Abilities By Dr. Ron Malcolm

GRIEF CAN COME IN MANY FORMS FOR CHILDREN. IT CAN OCCUR AFTER THE LOSS OF A GRANDPARENT, A FAVORITE PET THAT GOES MISSING, A DIVORCE OCCURRING IN THEIR HOME, OR A CAR ACCIDENT-CAUSING SERIOUS INJURY TO A FRIEND. HOW A CHILD WITH DIFFERENT ABILITIES APPROACHES THEIR GRIEF CAN SIGNIFICANTLY IMPACT THEIR LIFE. Here are nine simple tips for helping guide a child with different abilities through their grief:

1. Be honest about the situation Don't try to "shelter" your child from a life-changing situation. Many parents attempt to shelter children with disabilities from situations they view as negative or hurtful. They may feel their child cannot handle the stress or grief associated with the situation. However, all children, including those with disabilities, have a way of discovering the truth. It is always better for your child to hear about the situation directly from you instead of someone else. Your child will respect that they heard about it directly from you, not someone else. It will let them know you are approachable and willing to discuss their grief openly. It would be best if you also let your child know that grief is natural and can be more intense or long-lasting than everyday sadness. The death of a family member, a lost pet, or other stressors such as a divorce often result in a child grieving.

2. Make yourself available for questions A child with different abilities may have many questions surrounding situations causing them grief. They need to know you are accessible to them. They need to know you will be honest with your responses. This will let your child know where they

can access the "correct" information they seek. If they don't gain their knowledge from you, they may get the "wrong" answers for dealing with their grief from less knowledgeable people. Be prepared for questions you may not have an adequate response to. It is acceptable to tell your child you don't know the answer to a particular question. They need to understand that you may have to research their questions and get back to them later with a reply.

3. Ensure consistency in routines Regardless of the situation your child with different abilities is coping with, there must be consistency in their daily routines. Changing these routines can be very unsettling for a child, so helping them effectively transition from one routine into another can be difficult. Performing daily routines can assist your child with beginning the process of effectively dealing with their grief. It will also help stabilize their day at school and home.

4. Encourage communication All children dealing with grief handle it in different ways. Some children become chatterboxes and begin asking a million questions. Others may appear to become withdrawn and excessively quiet. Children with disabilities are no different. Each one may approach their grief differently. It will be vital for you not to force or rush your child with different abilities into discussing Exceptional Needs Today | Issue 15 | 31

PARENTAL SUPPORT a situation surrounding their grief when they are not ready to do so. Some children with disabilities may require additional time to process the actual events associated with the situation or come to terms with what is happening. Others may express their grief through drawing, painting, playing certain activities, or through music. Your child needs to know that you'll be there to listen when they are ready to communicate directly with you.

5. Be sure to practice self-care Many parents become absorbed in attempting to assist their child with different abilities to learn how to cope with their grief. In their attempt to be helpful and accessible to their child, they begin to neglect themselves. Parents must maintain a level of self-care. Parents who are physically and emotionally drained cannot support their children when they are exhausted. The process of working through grief can be taxing. If you care for yourself, you'll have the energy and concentration to assist your child with their grief.

6. Inform the teacher in case there is a change in behaviors During this grieving period, your child with different abilities may begin to experience difficulties at school. They may have trouble concentrating on their schoolwork. Their grades may start to drop. Social interactions may become increasingly complex, or they may withdraw altogether. Behaviors may begin to escalate with peers or teachers at the school. Suppose your child's teacher is unaware of the grief your child is dealing with. In that case, they may become confused about why your child is suddenly experiencing these behavioral or social concerns at school. Informing your child's teacher is a step in the right direction. As you maintain a close relationship with your child's teacher, they can assist you by informing you of daily changes they are witnessing at school. This will also allow your teacher to become a positive resource for you and your family.

7. Be a positive role model Children dealing with grief may not know how to manage such feelings properly. They may look directly at their caregivers as models for dealing with their grief. Demonstrating to your child with different abilities that it is okay to discuss their feelings with you is a significant first step. They must understand that

grief is a natural reaction to a negative or life-changing situation. Knowing you are available to listen and support them will provide a positive model to follow.

8. Remember, children can respond to grief differently Don't expect a child to work through their grief instantly. They are not a mini adult. They may react to grief in immature or inappropriate ways. Be ready to assist them with developing the necessary skills for effectively dealing with and discussing their grief. They may not understand the feelings of grief they are experiencing or know how to express them appropriately. Don't be surprised when you share a tragedy with your child if they simply ask to go outside to play or over to a friend's house. It may take them some additional time to process what has just been presented to them.

9. Monitor eating habits and sleeping patterns As you assist your child with different abilities in effectively dealing with their grief, you can also monitor situations affecting their physical health. Knowing all children react differently to grief, keep an eye on their sleeping and eating patterns to determine any areas of concern. Some children dealing with grief will begin skipping meals or overeating to compensate. Others will experience insomnia or cope with their grief by withdrawing and sleeping in their bedroom for long periods. These situations must be monitored so any concerns can be shared with doctors and teachers.

10. Seek professional assistance if needed Sometimes, parents will need additional support to assist their children with disabilities with appropriately dealing with their grief. While grief is natural, it can become crippling for some children. If you discover your child is becoming incapacitated by their daily routines due to their level of grief, you may need to look for additional support. If symptoms such as lack of energy, sleep disturbances, changes in appetite, or loss of interest in usual activities persist for several weeks, it may be time to see your child's doctor. Your doctor may be able to assist you with securing a local therapist or counselor who specializes in disability and grief.

Dr. Ronald I. Malcolm, EdD, works with students with disabilities in the Northwest Arctic. He recently retired as an Assistant Director of Special Education within a public school district. He 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 in Educational Leadership is from Northern Arizona University. 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.

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EDITOR’S LETTER

Exceptional Needs Today | Issue 15 | 33

MY WORD

Living in the Present While Preparing for a Loved One’s Future with Autism

By Marlene Ringler, PhD SOMETIMES AT NIGHT WHEN I AM TRYING TO SLEEP, I FIND MYSELF CRUNCHING THE NUMBERS— ADDING, SUBTRACTING, DIVIDING—WHILE ALWAYS ASKING, “HOW WILL MY ADULT SON WITH HIGH FUNCTIONING AUTISM (HFA) FUNCTION WHEN I AM NO LONGER HERE TO GUIDE HIM?”

ow old was Mary Triplett, I wonder, when she left her son, Donald Triplett, as described in the Atlantic Magazine, October 12, 2010 edition in an article entitled “Autism’s First Child”? Is it possible she was 81 when she left him, her 51-year-old autistic adult who lived alone in Mississippi from then on? Donald Triplett only recently died at the age of 89. Thus goes my thinking: he was left to age alone for nearly forty years. What sustained him? What plans and arrangements did Mary make as she approached an advanced age? I think about Temple Grandin, who seems ageless as she continues to advocate for an increased and better understanding

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of the autistic population. I am in my mid-seventies, and my husband is in his early eighties. Our son was diagnosed with high-functioning autism (HFA) over 25 years ago, and, at least in our minds, the future was the present as we faced the challenges of trying to manage a son with a serious disability. There were far too many things to do to help him carve out a meaningful life. We put aside our worries about his future. Our son studied and graduated from college, worked in different areas as he gained work experience, and learned how to cook for himself and care for his own apartment to the best of his ability. His needs were significant, and the available

MY WORD with autism. Among the many interesting seminars, I attended one presentation by Toby Abubakane, a self-identified autistic adult and researcher. Her subject was “Social Identity Threat Among Autistic Adults in Health Care Environments.” She eloquently described and addressed identity anxiety and co-occurring conditions among the adult autistic population and pointed out significant inequities in the health care systems currently available. As time moved on, and as these young adults aged, they also aged out of systems and services that had been previously developed for the mature autistic. The transition of care services that were being made available for young adults seemed to be no longer as relevant for the older autistic adult. Choosing a place of residence, for example, was a critical decision, but by the time an adult reaches full maturity and moves toward what Stephen Shore refers to as the golden years, that issue has pretty much been resolved. That is not to suggest that modifications in housing choices are not necessary. Of course, places of residence often define, limit, or restrict how a person can function daily. This is generally true for most populations, including those with special or exceptional needs. Learning opportunities and continuing education also appear less interesting since it is assumed, erroneously, in my opinion, that whatever level of education or training an exceptional needs person has attained is pretty much fixed. Thus, we tend to see adult care centers available to special needs older adults become places to hang out rather than develop, grow, and learn. Socializing is critical, but so is intellectual stimulation and sparking curiosity.

support systems for him, limited as they were, remained to be identified and engaged. Throughout the years, as he was growing and developing, I often wondered if there were sources that might give us insight and suggestions about planning for his future. The research areas at the time when autism spectrum disorder (ASD) was a popular topic of discussion focused primarily on the needs, diagnosis, and interventions developed specifically for children on the spectrum. But when my son was diagnosed in his mid-twenties during the early 90s, information about adults with a spectrum diagnosis was sparse. Fortunately, the landscape of information has expanded over the last several years. More attention and resources have been directed toward increasing visibility and identifying the needs of adults with an autism spectrum diagnosis. For example, INSAR, the International Society for Autism Research, entitled their conference “Shaping the Future of Autism Research: A Global Perspective” in their 2023 program. Indeed, several seminars explicitly focused on aging adults

But when my son was diagnosed in his midtwenties during the early 90s, information about adults with a spectrum diagnosis was sparse. We know that as we age, our needs change. This is, of course, true for those with exceptional needs. As our children approach their 50s and beyond, other issues become critical. We think about transitions in a very different way. Now is the time, I believe, to begin to put systems in place—organizations and services that can continue to play an essential role in the life of the aging adult with HFA. As readers of Exceptional Needs Today know so well, those of us who parent those with exceptional needs, me included, are not professionally equipped to forecast their future, which is Exceptional Needs Today | Issue 15 | 35

MY WORD fine, but this does not mean we are free from paying attention to their ongoing and ever-changing needs as well as being their most vocal and ardent advocates. To state the obvious, aging is inevitable. Perhaps not so obvious, however, is how we, as parents, deal with the myriad challenges associated with the aging of our children. It is never too soon to think about what lies ahead for our family members affected by a special needs diagnosis. The Tripp family, for example, set forth a plan for Donald at every stage of his growth, including and especially as he approached adulthood and aging. In many ways, he was a privileged child born into a family of considerable wealth and influence. His integration into his work and social community was not accidental. His family crafted a work plan for him, made him a very visible member of his neighborhood, and ensured he had a well-defined partnership with his local church, golf club, and travel advisors. He was a happy and engaged adult, aging with dignity and acceptance in his world, albeit in a very unique way. Quality of life for the aging adult on the spectrum includes strengthening relationships with persons and places that are good, healthy, and sustainable over the long term. Church and synagogue affiliations, for example, can add a spiritual dimension to their lives, which may otherwise not be available through typical marriages or partnerships. Participation in sports and recreational activities, such as those offered by local gyms or a community YMCA program, may contribute to a positive self-image and good health. In addition, attending concerts, plays, and movies are fun activities, usually available at reasonable costs and generally accessible. Programs focused on wellness, such as yoga, mindfulness, and meditation, are popular today and can contribute to better holistic health. In addition to quality-of-life areas, we must not overlook the significant need for suitable medical services. We know the aging adult years also include issues associated with the aging process. Research today also points to the increase in co-existing conditions such as anxiety, bipolar disorders, and depres-

sion among the autistic population. In addition, higher levels of neurological disturbances and diseases such as Parkinson’s seem to affect the autistic population disproportionately to their numbers. Whether due to lack of information or commitment to good nutrition, levels of obesity appear to be on the increase among the population of people with autism. Dr. Alycia Halladay’s research for the Simmons Foundation has provided excellent data to support the call for enhancing support services, including but not limited to medical systems. Setting up a legal framework that can address issues of custodianship, succession, and inheritance can help family members feel more at ease and comfortable as they look ahead to the future of their sibling or relative. A proposed lifetime budget for our special needs family member might help define future savings plans to guarantee that our special family member is taken care of in terms of financial issues. This step may also serve to relieve some of the concerns that people charged with future caregiving may be feeling as they face an uncertain future without ongoing input from parents. Tapping into and identifying public and private resources can also be a beneficial step in moving forward with a plan that makes sense to those who may be responsible for the future well-being of our adult children. Sometimes, the expression “invisibility of autism” is used when looking at the emotional, social, and medical needs of persons with autism. The assumption is that this population does not seem to need the support required of others with disabilities. So, too, with issues identified with the aging process. The working assumption seems to be that this exceptional population ages along the same continuum as every other population, so additional support is not required. Unfortunately, this is far from the reality we live in. Indeed, more support, as I have suggested, is necessary to ensure that the aging adult with autism ages well and ages comfortably, with the dignity and love that a caring and kind family and community may provide.

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

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SQUARE-FACEBOOK https://facebook.com/authormarleneringler/ LINKEDIN https://www.linkedin.com/in/dr-marlene-ringler/

EDITOR’S LETTER

Michele Wilcox Case-Management and Compliance Specialist

Does your school or district need Special Education Support?

I am certified as a special education administrator. I have been in the field of special education for 33 years. Two years ago, I started a case - management and special education compliance business, working with districts and charter schools as a case manager and compliance specialist for students with special needs using a remote platform. As a special education case manager/compliance specialist, I am a subcontractor who manages all aspects of the school's special education compliance and programming. This service will allow you to eliminate special education teaching staff to be used as case management. I write all IEPs and Evaluations, allowing teachers to provide direct service to students. Therefore, you can use a long-term substitute when staffing is hard to find. The scope of work includes:

• • • • • •

Special Education Case Management Special Education Compliance IEP Writing and Implementation Ancillary Service Management Evaluation Compliance Student Support

• • • •

Collaboration with All School Staff IEP Progress Monitoring and Reporting Staff Training Inclusion Support (modification and accommodation)

The benefits to your school will include support for all aspects of the special education program for students, support for staff, compliance with special education state and federal regulations, and a lower cost structure for an advanced teacher, not having to provide benefits or retirement to a contracted provider. I would greatly appreciate the opportunity to speak with you if you are interested in this alternative approach to staffing in your school.

GET IN TOUCH EMAIL: michelelucci55@gmail.com PHONE: 505-850-9787 https://www.linkedin.com/in/michele-w-b2aa54290/ @Michele W.

Exceptional Needs Today | Issue 15 | 37

KATE MAKES IT GREAT!

Guiding Exceptional Needs Children Through Language Hurdles By Kate C. Wilde

HELLO EVERYONE! LET'S DIVE IN STRAIGHT AWAY AND ANSWER SOME OF YOUR INTELLIGENT AND THOUGHTFUL QUESTIONS. THIS ISSUE, I AM ANSWERING AN ASSORTMENT OF QUESTIONS ON HOW TO HELP OUR SPECIAL LOVED ONES VERBALLY COMMUNICATE MORE EFFECTIVELY WITH THOSE THAT THEY LOVE. 38 | Exceptional Needs Today | Issue 15

COMMUNICATION STRATEGIES

Darlene from Manchester, U.K., asks:

1. Make sure you clearly label each object you offer or hand

Hi Darlene, the top three reasons Percy may be unclearly speaking are:

2. Do this without asking her to say the word for three whole

My Percy is eight years old and has autism and cerebral palsy. He speaks in short sentences, which I am very grateful for, but I am literally the only person who can understand him. What can I do to help him enunciate his words better?

1. He is either not opening his mouth enough or opening it too much.

2. He is not moving his lips into an "eee' sound where he

would move his lips towards his ears. Or in an "oooh" sound where he would move his lips as if he was about to kiss your cheek.

3. He is not putting his tongue in the correct place inside his mouth to make the "T," "G," or "I" sounds.

Observe him closely as he speaks to you to detect which of these movements he is not making. Listen carefully to him to detect which consonant sounds he is not producing. Then, pick one at a time to help him with it. Let's say he is not saying the "T" sound. You can help him in the following ways:

•

Verbally explain how to put his tongue behind your teeth to make that sound. As this comes easily to you, you may have to think about it a little and break it down into easy, manageable steps for him. Even though he is not fully verbal yet, I would suggest you speak to him in complete sentences and paragraphs explaining how to move his mouth. Why? Because I believe that all children and adults, even nonspeaking, understand most, if not all, of what is said to them.

•

Show him physically with your mouth how to move the tongue to make the "T" sound. Point to your mouth and tongue as you are showing him. Use a mirror, too!

•

Write out a word with the "T" sound you want him to say. Let's say it is the word "tickle." "Tickle" has two syllables: "Tic" and" Kle." Write each syllable on a separate piece of paper. Then, say each syllable as you point to them. That way, he gets to see he has to make two sounds, and it shows him where to make the "T" sound.

•

Once you have verbally explained and shown him, ask him to try to do it, too!

Yindi from Australia asks:

My three-year-old daughter communicates to me by pointing and then saying "dis," which approximates "this" for everything. That is the only word she uses. How can I help her to start using other words? Yindi, start implementing the following three steps:

to her with the object's actual name. Instead of using that word in a sentence, use only the single word, and use that word only multiple times. For example, as you offer her something to eat, say, "Eat, eat, eat, eat, eat." If you are handing her a pen, say, "Pen, pen, pen." weeks; that way, she can hear, process, and digest the single word clearly associated with the object without any pressure to say it.

3. After three weeks, start to leave a little pause for her to say

the word before you give it to her. As you pause, look at her with a friendly, expectant, listening expression that says, "I am looking forward to hearing you say the word."

These three steps are very simple but highly effective. I am excited for you to try them with your daughter.

Prisha from Sri Lanka writes:

My son Nirved is 12 years old. He often uses phrases such as, "I want to go outside" or "I want this cut up, please." He can also say "Yes" and "No" to simple questions I ask him. However, there are times when all he will do is repeat what I say to him. This can be very frustrating for him and me. Why does this happen? Hi Prisha, thank you so much for your question. What you are describing is called echolalia and is quite common in the autism community. Because this only happens sometimes for Nirved, I suspect it is a sign his brain is on overload, and he cannot take in new information or respond to demands or requests. So, when you ask him something, he only has the brain capacity to repeat what you are saying. Next time this happens, quietly observe him. You will probably find that his attention is on something other than you. He is most likely stimming. When our children are stimming, they regulate themselves, returning their brains to balance. So, one thing to change is always observing Nirved before speaking to him. If he is stimming, let him stim and wait until he has finished before asking him to talk to you. If you do this, you will find that he will be more able to answer you instead of repeating you.

Marco from Las Vegas, the U.S., asks:

I have a four-year-old on the spectrum who is nonspeaking. I live in the U.S., but my mother tongue is Italian. I speak to my son all the time in Italian as it is easier for me to express myself freely to him in Italian. My son's speech therapist told me I should only speak to him in English. But I want him to know Italian and am afraid he won't if I only speak English. What would you suggest? Hi Marco, I agree with your speech therapist if you plan to stay Exceptional Needs Today | Issue 15 | 39

COMMUNICATION STRATEGIES in the U.S. for the foreseeable future. If you return to Italy in a year or less, I would keep both languages alive for him. Speaking in either language is challenging right now, so picking one would be easier for him. Choosing one language will help him become proficient in pronouncing the words and sounds of that language. Once he gets that in English, you can start teaching him Italian. If you are staying in the U.S. and decide to pick one language,

know it does not have to be so black and white. You can still sing a few songs to him in Italian and use sweet celebratory words in your mother tongue to share your love with him. Eat yummy Italian recipes and do all the Italian holiday traditions with him so you can share your Italian culture with him as much as possible. Keep sending your questions in; reading and responding to you all is a pleasure. Until next time!

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. 🌐 www.katecwilde.com • www.autismcrisisturnaround.com IN SEARCH OF PERSONALIZED EXPERT GUIDANCE? 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. Submit your questions to submissions@exceptionalneedstoday.com.

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SAFETY STRATEGIES

Teaching Body Boundaries and Appropriate Touch to Our Most Vulnerable By Karen Kaplan

I RECENTLY HAD A CONVERSATION WITH A FRIEND ABOUT A HUG HE RECEIVED FROM A YOUNG ADULT WITH SPECIAL NEEDS. HE WAS CONCERNED ABOUT THE PROLONGED HUG SHE GAVE HIM. HE WONDERED IF HER ACTION MIGHT BE PERCEIVED AS A TYPE OF SEXUAL OVERTURE AND SAW HER AS A VERY VULNERABLE INDIVIDUAL.

arents need to help their children, who may not always comprehend how their words or actions can be misunderstood, be more careful when interacting with others. I believe teaching about body boundaries and appropriate touching can be very helpful. Teaching how others feel is essential as well. Another concept to address is teaching how one's actions towards others make others feel.

1. One way parents can do this is to obtain some guidebooks to help their children. Here are a few examples:

•

Body Boundaries Make Me Stronger: Personal Safety Book for Kids about Body Safety, Personal Space, Private Parts, and Consent that Teaches Social Skills and Body Awareness

•

Teach Your Dragon Body Safety: A Story About Personal Boundaries, Appropriate and Inappropriate Touching (My Dragon Books)

•

Let's Talk About Body Boundaries, Consent, and Respect: Teach children about body ownership, respect, feelings, choices, and recognizing bullying behaviors

2. Another way to approach the topic is to develop social

stories that help teach boundaries and appropriate touching. Here are two resources for social stories on the subject of touch:

• •

carolgraysocialstories.com Inappropriate Touch Social Story Exceptional Needs Today | Issue 15 | 41

SAFETY STRATEGIES

3. Teach the concept of public and private to your individual.

Teach about good touch and bad touch or unwanted touch. The social story method can be used here as well.

4. Be creative. Use lots of visuals. Use real-life experiences.

Use videos. Read relevant books aloud. Sexual health education could help.

5. Be a positive role model. Your child can learn from your ac-

tions. Teach the rules and why they exist to keep them safe (life, family, school, and personal rules). Teach them how to say "No," and model different phrases for them in a context that can help establish some boundaries. Have your child practice firm and clear denial as well. Teach phrases such as:

• • • • • •

I do not want to play. Do not push me. No means no. I need you to listen to me. When you said that, it hurt my feelings. What you did made me sad. I do not want a hug.

It is important to remember that, regardless of ability, young people have feelings, desires, and a need for intimacy. They need skills, knowledge, and support. Realize those who learn differently may be far more vulnerable to some types of abuse.

Karen Kaplan, MS, is a native San Franciscan. She completed her bachelor’s and master’s degrees at Arizona State University, Tempe, Arizona, in speech pathology and audiology. She minored in special education 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).

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All Things OT Ways Visual Efficiency Skills Are Vital To Motor Skills And Learning By Laura A. Ryan, OT, OTR, OTD

Exceptional Needs Today | Issue 15 | 43

OCCUPATIONAL THERAPY WHILE ONE CAN ARGUE THAT EACH OF OUR EIGHT SENSES (VISION, HEARING, TASTE, SMELL, TOUCH, VESTIBULAR, PROPRIOCEPTION, AND INTEROCEPTION) PLAY AN EQUALLY IMPORTANT ROLE IN LEARNING AND SAFETY, IT IS SURMISED THAT UP TO 80% OF ALL INFORMATION IS GLEANED THROUGH THE SENSE OF VISION (HUTMACHER, 2019).

herefore, the visual information one takes in must be clear and accurate for an accurate response. Visual efficiency skills are defined as "…the effectiveness of the visual system to clearly, efficiently, and comfortably allow an individual to gather visual information at school, work, or play (Scheiman, 2011, p. 57). Inefficiency in vision could impact social interactions, sustained attention to a task, gross and fine motor skills, and academic learning (Richards, 2019, p. 11). Visual efficiency skills involve the strength, range of motion, coordination, and stamina of the extraocular muscles around the eyes. They are separate from visual acuity, which is the clarity or sharpness of vision (American Optometric Association, 2022). The extraocular muscles are responsible for moving the eye through the fields of space (horizontal, vertical, and torsional/ diagonal (Purves et al. 2001) to take in visual information. There are multiple "jobs" the eyes must complete for efficient vision. One is tracking, which is controlling eye movement at all speeds and across all fields of motion, as well as across a variety of distances. Another is teaming, which is the coordination of both eyes to work together (Boston Children's Hospital, 2023). To further break down these jobs, efficient tracking requires the eyes to maintain sight on a stationary object, also known as fixation; maintain sight on a moving object, known

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as pursuit; and moving sight accurately and smoothly between two points, known as saccades. When focusing, the eyes must be able to move between a near point—such as reading a worksheet on the desk—and a far point, like reading information on the whiteboard. Finally, teaming, also known as vergence, requires the eyes to work together in unison. This skill comes into play when catching a ball or focusing on a very near point,

Inefficiency in vision could impact social interactions, sustained attention to a task, gross and fine motor skills, and academic learning. such as looking at a handheld device like an iPad. Difficulty coordinating the eyes to work in unison may result in convergence insufficiency, which can result in blurred or double vision.

OCCUPATIONAL THERAPY The focus on and treatment of visual efficiency skills encompasses a field of practice called behavioral or developmental optometry and is an emerging field in the area of optometry. Weak visual skills can be addressed by vision therapy, which, as defined by Boston Children's Hospital, is a series of exercises to train the eyes to work together in a more coordinated manner. Vision therapy is a set of prescribed eye exercises and activities tailored to the participant with the goal of having the eyes work together better. Vision therapy has been documented to be effective in focusing on inefficiencies such as convergence insufficiency. The efficacy of the training for tracking and teaming inefficiencies or the role of vision therapy in addressing other conditions such as attention deficit disorder or learning disabilities is still very much being studied. Occupational therapy practitioners (OTP) include visual motor integration skills during a comprehensive evaluation. Visual motor integration skills encompass visual perception, which is making sense and understanding what one sees, and motor coordination, which involves coordinating the eyes and the hands to respond to what is seen. Visual motor integration skills play an important part in foundational skills such as handwriting and sensory regulation. Often, OTPs will assess how a child perceives and responds to a visual presentation through the evaluation of visual perception skills, motor coordination skills, and the blend of these skills, visual motor integration. It is reasonable to expect that visual efficiency skills should be considered during the evaluation of visual motor integration skills. However, occupational therapists should conduct a robust and personalized interview with the child as part of the occupational profile. During this interview, information such as the child's challenges in school will likely come to light. In my experience, students have reported difficulty reading a line of text or commenting that the writing on the whiteboard is blurry, which has provided cause to delve a bit deeper into visual efficiency skills and prompted a recommendation to the parents to mention the complaints to the medical doctor. Additionally, looking at the child from a wider lens, OTPs may also look at other meaningful occupations and how visual skills support those occupations. These occupations could include gross motor skills, such as catching a ball or playing hopscotch, fine motor skills, such as placing pegs in a pegboard, and self-care skills, such as buttoning a shirt. Backing up a step and assessing the child's visual efficiency skills as a precursor to the achievement of meaningful and age-appropriate occupations should be considered. Using

selective assessment tools such as the Visual Skills Appraisal (Richards, 2019), occupational therapists are well-positioned to perform a cursory yet valid assessment of these skills. While OTPs cannot diagnose vision inefficiencies, these skills should be considered as a reason for exclusion if a child is having difficulties across a wide area of school settings, in social situations, or with the achievement of self-care milestones, especially if other avenues of evaluation (such as speech/language or academic testing) did not produce valid reasons for such difficulties. Information from the Visual Skills Appraisal should be passed to the family for follow-up with their medical professional for further advisement. As noted earlier in this article, with the exception of convergence insufficiency, the efficacy of vision therapy for visual skill vulnerabilities is still being studied, although anecdotal evidence is very much in abundance, and a conversation with a medical professional should be the next step. However, in the classroom or other settings such as home, information from this appraisal could be used to inform accommodations. Some accommodations may include utilizing a line tracker when reading, increasing the quality of light when reading, using a slanted surface to provide a blended and supported plane for reading, preferential classroom seating, and prescribed moments of rest for the eyes. With these simple accommodations, access to visual information, whether it be from a computer, textbook, or whiteboard, will be more accessible. References American Optometric Association. (2023, September 30). Visual Acuity. American Optometric Association. https://www.aoa.org/healthyeyes?sso=y Boston Children's Hospital. (2023, September 30). Vision Therapy. Boston Children's Hospital. https://www.childrenshospital.org/treatments/ vision-therapy Hutmacher, F. Why is there so much more research on vision than any other sensory modality? Frontiers in Psychology (2019). 10, 2249. https:// doi.org/10.3389/fpsyg.2019.02246 Purves, D., Augustine, G.J., Fitzpatrick, D. (2001). Neuroscience, 2nd edition. Sinauer Associates. Richards, R. (2019). Classroom Visual Activities: CVA-2: A Manual to Enhance the Development of Visual Skills. Companion book to Visual Skills Appraisal. (2nd ed.). RET Center Press. Scheiman, M. (2011). Understanding and managing vision deficits: A guide for occupational therapists (3rd ed). Thorofare, NH: SLACK Wang, B. & Kuwera, E. (2022). Vision therapy: a primer and caution for pediatricians. Children-Basel9(12). doi: 10.3390/children9121873

Laura A. Ryan, OT, OTR, OTD, is an occupational therapist who grew up on a large horse farm in Massachusetts. She has been practicing for over 30 years and has been using hippotherapy as a treatment tool since 2001. She enjoys seeing the happiness and progress each person has achieved through the therapeutic impact of the horse. Laura has also developed a program for breast cancer rehabilitation using therapeutic input from the horse. ✉ hooves4healingot@gmail.com Exceptional Needs Today | Issue 15 | 45

PARENTAL SUPPORT

Embracing My Journey: Navigating Higher Education with Autism By Sydney Holmes, MA If I could write a letter to my younger self or those on the spectrum in middle school, I would write something like this: Dear Younger Me (Or Those Neurodivergents Like Me Still Trying to Figure Your Label Out), As I reflect upon my journey from high school to college as someone with autism, I'm reminded of all the challenges, triumphs, and growth I've experienced along the way. If I could offer you one piece of advice, it would be to hold onto hope and remember that your journey is unique, and your experiences will shape you into a stronger and more resilient individual. High school, with its dreams of friendship and belonging, often did not meet my expectations. The friendships I hoped for seemed to slip through my fingers like sand, and the betrayal I experienced from someone I thought was my best friend cut deep. The hurt and isolation I felt during those times were almost unbearable. I questioned why these things were happening to me, and like you, I wanted to belong so badly. As I moved on to college, I brought my longing for a connection with me. I discovered that the journey to finding genuine friendships and self-acceptance is a process that doesn't always unfold how we anticipate. It took time and trial and error to realize I needed to accept myself before expecting others to accept me. One of the key turning points was finding a true friend who understood my challenges and embraced me for who I was. She became my anchor when I was struggling and taught me that real friendships are built on acceptance and mutual respect. Through her support, I found the courage to become more involved on campus and open up about my autism journey.

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You'll face ups and downs, like the rollercoaster of roommates and the challenges of relationships. But remember, these experiences will be your teachers, helping you refine your under-

MY WORD standing of yourself and others. It's okay to make mistakes and learn from them. You'll find that true friends will stand by you even when things get tough. As I embarked on my college journey, I stumbled into unexpected opportunities that allowed me to embrace my unique talents and passions. From being involved in clubs to advocating for autism awareness, I found a sense of purpose that fueled my growth. In these moments of passion and connection, you'll find the most authentic versions of yourself. The road to self-acceptance wasn't without its hurdles. I struggled with blaming my Asperger's for my challenges and even questioned why I was made this way. Yet, through friendships, faith, and support, I realized that my label didn't define me; it was just a part of who I am. Embracing my label and sharing my story became empowering, inspiring others to embrace

their own uniqueness. Your journey may take twists and turns, but each experience will contribute to your growth and understanding. As I close this letter, remember that your future is bright and your limitless potential. Embrace your journey, learn from every experience, and above all, never stop believing in yourself. With warm regards, Sydney Holmes, MA This letter/blog is based on the chapters Sydney has written for a book by Dr. Stephanie C. Holmes, BCCC, published in 2023, called Embracing the Autism Spectrum: Finding Hope and Joy Navigating the NeuroDiverse Family System. Sydney is part of a family podcast released on October 2, 2023. https://www.mentalhealthnewsradionetwork.com/our-shows/neurodiverse-christian-couples/

Sydney Holmes was diagnosed with Asperger's syndrome at the age of six, then reassessed in her teens with Autism, Level 1. She has not let her diagnosis become a crutch or an excuse to prevent her from achieving her goals in life. Sydney graduated with her bachelor’s degree in history and minored in education. She graduated with her Master of Arts in Public History and Post Baccalaureate in Museum Studies in 2022. She has since moved across the country and landed a job in the museum field, which is just the latest and greatest on her impressive museum resume. Sydney hopes her story will inspire others in the autism community to reach their goals. Sydney is passionate about human trafficking awareness and promoting the rescuing of trafficking victims through her soap ministry, Simple Suds by Syd, where she raises funds to give toward Project Rescue. She loves all things history and cats, especially her new emotional support kitten, Piper. 🌐 https://www.holmesasr.com/staff-and-board

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STAYING FIT AND HEALTHY

Could More Sleep Be the Answer to Increasing Academic Success for All Abilities? By Carli Haskovec, MA, EdS

WE HAVE HEARD ABOUT THE IMPORTANCE OF SLEEP THROUGHOUT OUR LIVES, YET MANY ADULTS STILL DON'T GET THE RECOMMENDED SIX TO EIGHT HOURS OF SLEEP OUR MINDS AND BODIES BOTH NEED. I INCLUDE MYSELF, AN OVERACHIEVING MOM OF TWO, WIFE, DOG MOM, FULL-TIME EDUCATOR, AND PROFESSOR, WITH THE MANY OTHER ADULTS WHO PRIORITIZE THINGS ABOVE SLEEP. MY MIND AND BODY FEEL AS IF THEY ARE IN A CONSTANT, NEVER-ENDING STATE OF EXHAUSTION.

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STAYING FIT AND HEALTHY

everal months ago, my husband, two sons, and I took a 10-hour road trip for my youngest son to compete in a Nationals Level Track meet. On the drive down, I tried catching up on TED Talks I wanted to listen to. I pressed play to begin listening to the TED Talk entitled Sleep is Your Superpower by Matt Walker, a brain scientist who has studied the effects of sleep on the brain for over two decades. From the very beginning of the TED Talk, Dr. Walker had me hooked. I listened to the entire episode and immediately listened to it again. Dr. Walker began by talking about some of the physical effects lack of sleep can have on adults. However, as he delved deeper into the topic, I realized more and more how his discoveries pertaining to sleep were significant to me both as an educator and as a mother. I began to think about how often I have seen students fall asleep during the middle of a school lesson. I reflected on the incessantly contagious yawning that constantly rolls through classroom after classroom every day of the week. Typically, when students are asked why they are so tired at school, teachers hear responses such as being up too late playing video games, watching television, or that the student just could not sleep. As educators, we are problem solvers. When students struggle with multiplication and division facts, we find strategies to help them learn those skills. When hundreds, perhaps thousands of students fell behind on literacy skills due to the COVID-19 shutdown, legislation was passed to remediate the developed skill gaps. When students are identified as having learning disabilities, we provide individualized accommodations and modifications to ensure they receive the necessary instruction. However, as I continued listening to the facts Dr. Walker was presenting, I realized that lack of sleep is something that, to my knowledge, has not been taken into consideration on a large scale as something that could significantly impact student learning. According to Dr. Walker, not only do we need sleep after learning to "press save" on the material we learn, but we also need to have an adequate amount of sleep before we learn, somewhat like a dry sponge needs to be moistened before it is ready to be used. Dr. Walker continues by discussing a study in which his team sought to determine if "pulling an all-nighter" was the best approach to take when studying before a test. One group of individuals was able to get a total of eight hours of sleep. However, the other group had to stay awake all night without caffeine or naps. The next day, an MRI study was performed on all participants' brains. The researchers found "a quite significant 40% deficit in the ability of the brain to make new memories without sleep (Walker, 2019)." The participants who had a good night's sleep showed healthy learning-related brain activity, while those who had not slept the night before showed little learning-related signals. At this point, I decided I wanted my family (especially my two

The participants who had a good night's sleep showed healthy learning-related brain activity, while the participants who had not slept the night before showed little learningrelated signals at all. teenage boys) to listen to this podcast. Since we were only about two hours into our 10-hour drive, my family both agreed to listen. I reinforced to my college-age son the results of the study conducted above and how they found that little to no sleep led to little to no learning-related signals being visible on the MRI. Some of us need visual confirmation to believe that certain things are true…well, there were visual MRI results to prove the power of sleep. I took this as a good parenting moment to remind my sons that pulling "all-nighters" literally has Exceptional Needs Today | Issue 15 | 49

STAYING FIT AND HEALTHY

a negative effect on how your brain functions. I am just as guilty as the proverbial "next guy" as I have let my sons stay up way too late way too many times. However, listening to this podcast (now with my family) thoroughly convinced me it is not just an old wives' tale where someone guessed the amount of sleep we need to be fully functioning adults. This is real, as evidenced by the MRI study results mentioned above. Now, let's focus a moment on our children with exceptional needs. Research shows that lack of sleep affects all individuals negatively in a variety of ways. However, lack of sleep has also been shown as a predictor of exacerbating previously existing exceptional needs. A study conducted by Knowland et al. (2022) examined the impact of quality nighttime sleep versus daytime, sub-par quality of sleep on 354 children with language deficits to determine the impact sleep quality had on language acquisition. The results indicated that quality nighttime sleep benefits children's memory development and improves vocabulary acquisition by age five. Furthermore, studies show individuals with attention deficit hyperactivity disorder (ADHD) "have worse objective (impartial measures such as those generated by polysomnography or actigraphy) or subjective (perceived) sleep duration (Scott et al., 2013), worse sleep quality (Cortese, Konofal, Yateman, Mouren, & Lecendreux, 2006), are at increased risk for sleep disorders (Cassoff, Wiebe, & Gruber, 2012), or experience greater daytime sleepiness (Cortese et al., 2006)" (Gaultney et al., 2019, p. 43). The disruption of sleep and its impact on the prefrontal cortex is also believed to contribute to an increase in ADHD symptoms.

So, what does this mean for us as educators? Many of the primary changes that need to be made start at home. However, we can teach our students with and without disabilities about the importance of letting our brains rest at night so they can take in what they learned during the day and be ready to soak up more information the next. We can educate parents about the direct correlation between children getting enough sleep and learning and share statistics that impact children and adults. Links have been found between a lack of sleep and multiple types of cancers, Alzheimer's Disease, and even distortion of genetic activity due to lack of sleep (Walker, 2019). Educating both students and their families will hopefully improve sleep habits more than if we had stood aside and said nothing. Could it be that in all our attempts to close academic gaps by purchasing the latest and greatest reading and math programs, we have inadvertently overlooked an area that could be equally important to helping our students reach their academic potential? References Gaultney, J. F., Peach, H. D., & Banerjee, M. (2019). Sleep factors may contribute indirectly to association between symptoms of attention-Deficit/ Hyperactivity disorder (ADHD) and impulsivity and future orientation among college students. Learning Disabilities (Pittsburgh, Pa.), 24(1), 43-54. https://doi.org/10.18666/LDMJ-2019-V24-I1-9146 Knowland, V. C. P., Berens, S., Gaskell, M. G., Walker, S. A., & Henderson, L. (2022). Does the maturation of early sleep patterns predict language ability at school entry? A born in Bradford study. Journal of Child Language, 49(1), 1-23. https://doi.org/10.1017/S0305000920000677 Walker, Matt (2019). Sleep is Your Superpower. https://www.ted.com/talks/matt_walker_sleep_is_your_superpower/ transcript

Carli Haskovec, MA, EdS, began her career as a high school special education teacher. She now serves her local Board of Education as a Countywide Behavior Specialist. She works as a special education adjunct professor at several universities and teaches GED classes at her local community college. Carli is also pursuing her Doctor of Education in Special Education. She lives in Florence, Alabama, with her husband of 23 years. She has two sons, a sophomore at Mississippi State University and a junior in high school.

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LETTER 7th Annual Creating Trauma-Sensitive SchoolsEDITOR’S Conference

Dr. Nadine Burke Harris

Ross Greene, PhD

Stuart Shanker. D.Phil Susan Hopkins, EdD

The largest gathering of Trauma-Informed Educators Lori Desautels, PhD

Over 70 workshops CEs & College Credit Available Something for Everyone: Educators, Parents/Caregivers, Community Leaders Snap Me to Register

hosted by Exceptional Needs Today | Issue 15 | 51

SKILLS FOR LIFE

Neurodivergent

Accommodations: How do you ask for help? By Jagmeet Sangha

Do you use closed captioning while watching a video?

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Provide information in multiple formats (e.g., written, audio, video). This allows neurodivergent individuals to access content in ways that best suit their cognitive preferences and abilities.

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Make reasonable allowances for flexible deadlines and self-paced learning. Implementing some flexibility here can reduce stress and anxiety for neurodivergent individuals who may struggle with rigid timelines.

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Create environments that are sensitive to sensory needs. Considering factors such as lighting, noise levels, smells, and available physical space can make a significant difference for individuals with sensory processing differences.

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Recognize and value the unique strengths of neurodivergent individuals. Considering how those with neurological differences can aid in the areas of creativity and problem-solving leads to greater inclusion and diversity of thought, which typically leads to more dynamic solutions.

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Stay curious and ask more questions. How does your employee, student, or child learn best, and how often do they ask for help? These patterns can show you ways to accommodate their learning and productivity style best.

Do you often opt for the elevator when stair options are also available? Do you rely on prescription eyeglasses? These are all different types of simple accommodations commonly used or seen. Perhaps you haven't thought of it before, but you probably also use an accommodation somewhere in your daily work life. Maybe you enlarge the size of your computer's text to make it easier to read, create calendar reminders for yourself, or take regular breaks from difficult tasks. Companies need to recognize and offer different accommodations in the workplace to create inclusive and supportive environments. When employers are mindful of their workforce's diverse needs and preferences, they ensure that everyone can participate fully and comfortably in their work. Neurodivergent individuals, such as those with autism, attention deficit hyperactivity disorder (ADHD)., dyslexia, and other neurological differences, have unique learning styles and strengths that can be harnessed effectively through the personalized approaches that accommodations can offer them. Employers can use this information to increase workplace well-being and productivity of their neurodiverse teams. Here are a few simple accommodation strategies to implement in the workplace (or, quite frankly, in any setting):

Accommodations help promote our authentic abilities. Sometimes, we just need a little help to get to the finish line—and when we recognize and provide the necessary support, we remove barriers that might hinder someone's progress and allow them to excel in their pursuits.

Jagmeet Kaur Sangha is a Board-Certified Behavior Analyst. For over a decade, Jagmeet has worked in homes and schools, providing applied behavior analysis (ABA) services to children, supporting educators, and offering parent training consultations to caregivers. She is invested in educating the community and helping families and individuals receive top-quality behavior intervention services. Jagmeet uses the science of ABA to promote well-being and advance individuals, organizations, and society through connection, education, and behavior science. Her organization, Behavior Pivot Consulting, works with employees and employers to create neuro-inclusive communities within the workplace by focusing on identifying and building on individual strengths, promoting self-advocacy, and offering person-centered solutions related to workplace wellness. 🌐 https://www.behaviorpivot.com ✉ info@behaviorpivot.com

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EDITOR’S LETTER

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MY WORD

Two Good Years: Celebrating Our Proactive Exceptional Education Director By Melanie K. Milicevic

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MY WORD WHAT MAKES AN EXCEPTIONAL SPECIAL EDUCATION DIRECTOR OR EDUCATION SPECIALIST? LET’S BEGIN WITH WHAT DOESN’T WORK. THEN, I HOPE IT WILL BECOME EVIDENT WHAT SHOULD BE WRITTEN IN EVERY JOB DESCRIPTION WHEN IT COMES TO HIRING SPECIAL EDUCATION DIRECTORS OR SPECIALIZED SERVICES EDUCATORS. I WANT THOSE IN THE FIELD TO UNDERSTAND THAT THEIR DECISIONS MAKE THE MOST SIGNIFICANT IMPACT ON OUR LIVES. THE CHOICES YOU MAKE TODAY IMPACT FAMILIES FOR YEARS TO COME. THEY CAN MAKE OR BREAK A FUTURE.

hen my son was in preschool and early elementary years, we had an unfortunate experience with our Director of Special Education. She made it clear that my child would never break free of his special education classroom and refused to mainstream him despite my passionate protests. The only options I had left after fighting, advocating, and spending all my money was to move or withdraw him from special education entirely, which would invalidate and void his Individualized Education Program (IEP). I filled up bathtubs and bathtubs of tears in support of my child. Why won’t you give us a chance, I would ask? Why won’t you let a parent tell you what they think is best for their child? How could you crush the possibilities for a child or family? How do you sleep knowing you are standing in the way of opening a door for a child? We ended up moving. Truthfully, I still feel some trauma because of this experience. It’s numbing realizing how trauma stays in the body, and you relive it from time to time, even as you tell the story about a life-changing event. This is post-traumatic stress disorder (PTSD). Though this threat isn’t as significant as a bombing or other violent act, the trauma of having your child neglected, rejected, or not given what is appropriate is still painful. Even today, when I drive north and pass by the area I once lived in, I feel that hot, sweaty feeling come over me. I’m constantly troubled remembering how inflexible and harsh this person seemed in our situation. She was wrong about everything she thought was possible for my child. She did not serve her students and most certainly not my child. She was against giving special needs children what they deserved: access to the curriculum in settings that would enable those students to progress. You see, you don’t always know how a special needs learner will do with something until you try it out. Neurodiverse learners often need additional opportunities to trial settings and curricula with great flexibility. During those five years, it was as if I was up against a mammoth. I could not win or move forward even when I hired a highly respected advocate. She and “my advocate” decided my child’s fate was only going to be in a special education setting. They stamped it on every page of his IEP, so it would not be possible for us to escape their judgment. Had I listened to both of them, I’m sure we would be failing today. One day, I hope I will be courageous enough to send this writing to both

this director and that advocate. Today, my hope is that if you happen to be in my shoes, you will never take what someone tells you about your child as the absolute and only truth. As a parent, you are always the best judge of your child’s potential, and rejecting the impressions others have is an essential skill that must be learned. This is especially important when you know they are wrong. Once we sold our beautiful home and moved, I met a new, lovely director who was middle-of-the-road to offer support. She saw that my child needed an instructional assistant and got him one immediately. She saw he did well if someone was around to facilitate learning and motivate him. It worked. All the things I believed as an educator and witnessed in my own classrooms years ago were happening in the way I believed they could for my own child.

You see, you don’t always know how a special needs learner will do with something until you try it out. Whereas in the previous district, my child was barely scooting by, I saw significant gains once he was in a mainstream classroom with the appropriate support. Inclusion works for many, many children. Why would anyone be in a separate setting that doesn’t need to be? It is one of the most neglectful things I have witnessed in education. Denying a child a free and appropriate education is not only against the law; it’s immoral. These two individuals who wronged us from our early years are forgiven, but what they did will not easily be forgotten. My work as a writer is to educate administrators and advocates like them and help everyone understand that neurodiverse learners deserve new opportunities. We don’t need your blessing to enroll in a school or to join a classroom. You are not almighty God. If you want to see change, you say yes much more than no. You offer hope to those who work harder than everyone else in a classroom because it’s the right thing to do in education. It’s what we pay you to do.

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MY WORD challenges, and goals for the following two years. We came together when there was a hiccup or a concern. We communicated like a team. I was not afraid of her, and she not of me. There was mutual respect and shared input in every conversation. I told her repeatedly that you could never leave us because you’ve been what I’ve been looking for all this time, and I just have to keep you a little longer. We laughed about it often, and though I knew she was a military wife with a young child, I just kept reaffirming that she could never go anywhere. I was not ready to let her go.

All was on track, and we had two really good years. They were solid years with significant changes and growth. We were almost at the point of having a solid social group! Then came COVID-19, and strong gusts blew out our once flat balloon of progress, deflating once more. Back to the beginning we go. Was this the new normal? How could we possibly recover from this monumental setback? We were home alone again, like pre-diagnosis days, with no support, no social growth, and an academic regression began. I decided to pull my children from our district again as I didn’t see them adequately supporting the special needs learners. I did not want to be a part of this continued educational fiasco; we had to gain speed if we stayed on a diploma-bound track. There was no choice but to leave after two years of absolute chaos and neglect. Our new director was a wild child with purple hair! Immediately, she shared that she was all about the children and that middle school was absolutely her specialty. Her confidence impressed me because I can usually feel the nervousness teachers have around me, knowing about my educational background and my strong advocacy skills. But not her. She came blazing into my child’s IEP meeting and jumped on board. She listened to all his former team members discuss what kind of child I had and how caring, smart, and exceptional he was. And she was there enthusiastically taking notes and soaking up every word. For the first time, I thought, this might be it. This might be what I’ve been looking for over the last ten years. Was it possible I had found the director of my dreams? I had. She did not disappoint. We discussed needs, strengths,

And yet this week, exactly two years since she came into our lives and changed everything for the better, she announced her departure. My children came home wide-eyed and told me. They know how much I value our director and all she has done for our family. They know I am at ease since she is right there advocating while I am resting, refueling, and trying to be a person again. That’s a great gift when your children feel your calm. That changes everything in a home. But I had to put on a tough and confident face for my children, and I said, “It’s okay, guys.” All will be okay, even if I don’t really know if it will be. I have to be fearless for them so they don’t panic and so they can learn to go with the flow as well. Change is inevitable. In special education, the good ones always leave. I cry every time they do. Two years. Two years seems to be a pattern in this life. You get someone wonderful for this short period, and then you rebuild, like the Romans, one brick at a time. Does this ever end? I felt angry today about it, not at her, of course, but just because I had regained a tiny bit of myself again. I got to exercise again—I got to sleep again. I got to read something other than IEPs and legal special education articles. I got to be a person these last two years because I knew my children were in her arms. I was safe. They were safe. When these transitions happen, it’s very easy to become uncomfortable about all of it. But now I have to show emotional maturity for my two children. I have to teach them that life is constantly a ride on a Ferris wheel. You go around, and you stop. Then you start again and go another lap or two or three. But it can’t go on forever like that. You have to stop at some point and allow new people to get on board with you. You have to remain open about these new people even when you’ve lost someone remarkable and they seem irreplaceable. So today, I will wish for two more years. Two more years with someone wonderful because two years can change your life. Two years can be the catalyst that teaches you to trust again on this bumpy ride with your family. Two years can give you hope even when rebuilding from another critical starting point.

Melanie K Milicevic is a graduate of UCLA and a former 5th-grade teacher for the Los Angeles Unified School District. She mainly worked with second language learners and collaborated with special needs families to meet the unique needs of her students. She now advocates for her own special needs children and continues to work with schools to help educate them about ways to include children of all abilities in the classroom. Melanie is a passionate writer and has been published in Autism Parenting Magazine, Exceptional Needs Today, and Special Needs Resource Foundation of San Diego. She lives in San Diego with her husband and two children.

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EDITOR’S LETTER

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Ways Being a Special Needs Sibling Enhanced My Life and Success By Siris Raquel Rivas-Verdejo, M.A. CCC-SLP/LD MY LIFE HAS BEEN A JOURNEY MARKED BY HOSPITALS, THERAPISTS, STRESSED PARENTS, CULTURAL SHIFTS, AND CONSTANT CHANGE. IT ALL BEGAN WHEN MY FAMILY AND I MOVED FROM PUERTO RICO TO CHICAGO, DRIVEN BY THE DETERMINATION TO PROVIDE MY SISTER, SIRA MHIA, WITH THE BEST POSSIBLE MEDICAL AND THERAPEUTIC SERVICES FOR HER SPINA BIFIDA. THIS DECISION, I LATER REALIZED, NOT ONLY TRANSFORMED HER LIFE BUT ALSO HAD A PROFOUND IMPACT ON MY OWN. 58 | Exceptional Needs Today | Issue 15

MY WORD

t age four, Sira Mhia defied the odds by learning to walk, a feat once deemed impossible. She pursued her education, earning an associate degree in liberal arts, and today, she lives independently with her long-time boyfriend. My brother, Shaniel Omar, was born two years later with his own challenges—diaphragmatic hernia, a heart murmur, and a profound to severe bilateral sensorineural hearing loss. Despite these hurdles, he has become a remarkable individual who excels in sports, effortlessly moving between the hearing and deaf communities and works as a cybersecurity software engineer utilizing his strong computer skills. As the oldest sibling, I was acutely aware of the demands placed on my parents—both bilingual educators in the Chicago Public Schools. They prioritized learning, exposing us to various experiences and people through enrichment activities across the city. They encouraged us to develop independent thinking skills and pursue our creative or athletic interests. Amid countless doctor's appointments, surgeries, follow-ups, and therapy sessions for my siblings, I quickly learned to entertain myself in hospital waiting rooms or a corner. Reflecting on my childhood, I understand my parents never intended to neglect me, nor did my siblings desire to monopolize their attention. Yet, there were times I felt resentful and put a lot of pressure on myself to be a "good daughter" and "not add to the stress" as part of my responsibility of being the eldest sibling. As my parents provided more help with homework to my siblings due to their learning challenges, I pushed forward and placed high demands on myself to be a good student. My perspective evolved as I grew older and became involved in babysitting, volunteering on crisis hotlines, and working with individuals with special abilities (my preferred term over "special needs"). I began to appreciate the unique experiences and skills my siblings had bestowed upon me—gifts others often had to develop independently. Here are some of the reasons my life is richer because of my siblings:

1. The power of expectations The Pygmalion Effect, also known as the Self-Fulfilling Prophecy, suggests that when adults hold high expectations for a child's performance, that child is more likely to achieve at a higher level. Conversely, low expectations can lead to lower performance. My parents exemplified this principle by focusing on what my sister and brother could achieve rather than their limitations. Despite early predictions, they believed in their potential. I have internalized this perspective and apply it in my interactions with others. I constantly ask myself whether I am limiting possibilities with my projections.

•

Am I walking into this [fill in the blank] with projections that are limiting what's possible?

•

Am I holding myself back in some way?

•

What is uniquely possible with [fill in the blank] if I was totally me and saw them completely?

It's important to note that the relationship between expectations and performance is complex, and many factors influence a child's development. Starting from a place of looking at someone's strengths and gifts as you set high expectations for them while balancing this with support, encouragement, and a nurturing environment is crucial for fostering positive development and continued forward momentum.

2. Maintain a long-term view Parents and educators often find themselves overwhelmed by the demands of the present, leaving little room for future planning. While being present in the moment is essential, my parents' ability to simultaneously look ahead proved invaluable. They made the crucial decision to move us to the suburbs when they realized our neighborhood schools couldn't provide the necessary support for my siblings nor the level of stimulation and advanced class options I required. A few years later, there was a sixth-grade Individualized Education Program Exceptional Needs Today | Issue 15 | 59

MY WORD (IEP) meeting for my sister where my mom asked, "So how are you getting her ready for middle school?" that was met with crickets. They weren't thinking of the skills she would need for seventh grade. They were focused only on getting her through that school year. That question opened the door to them, totally revamping her plan and setting her up for greater success.

4. Learn and utilize mediation skills

Now, I'm always toggling between what is needed and what is required for the future for myself and my clients. In my relationships, I keep in mind what I truly desire to have in my life while exploring the ways I can create that step by step, checking in periodically to see if my desires have changed. For my clients, I meet them where they are while also looking at what skills they need to be happy, healthy, and successful in their unique way in five years, ten years, or twenty years.

Navigating injustices and prejudices strengthened my resolve, empowering me to advocate for others. These experiences inspired me to create the "Being a Different Possibility Family-Child Coaching Program," where families use their unique qualities to enhance their journey. This program offers comprehensive and holistic sessions integrating evidence-based practices, multi-sensory support, dynamic, energetic tools, and easy-to-implement exercises. I now get to empower parents and caregivers to confidently advocate for their children so they can have lives beyond what has been projected and expected of them.

It is critical for families of people with special abilities to have professionals in their circle who can alternate between the present and the future and communicate in an empowering way about both.

3. Acknowledge life isn't fair As a child, I often protested, "That's not fair!" when my siblings received special attention or when my parents' commitments prevented them from giving me something I wanted at the time. My parents' response, "There is no such thing as fair," initially frustrated me but later liberated me. Life isn't fair, and instead of seeking fairness, I've learned to embrace difference. Each of us requires unique support, parenting styles, and opportunities. Recognizing this diversity, I approach situations by considering what's possible, what's needed, and what's required. I can't change all the things that aren't fair, but I can acknowledge what I know and what can be created given what I know so I can start to partner with others who can further enhance my journey. Furthermore, differentiated instruction, tailoring lessons to individual interests, needs, and strengths, has become a best practice in education. I apply this principle to my interactions, focusing on creating possibilities rather than conforming to a one-size-fits-all approach. Who wants to be put in a box molded for someone else?

Growing up with siblings who had special abilities honed my ability to educate others about our family's experiences, bridging the gap between societal perceptions and our reality. This skill has proven invaluable in my professional and personal relationships.

5. Remember there is light In the darkest moments, there is still hope and light. Despite being born practically lifeless, my brother's miraculous survival is a testament to this truth. His use of the extracorporeal membrane oxygenation (ECMO) machine, which later became vital for COVID-19 patients, illustrates the unforeseen impact of our differences. You never know how your difference will ripple out and create in the world. I hope this article offers solace and guidance to parents raising multiple children, especially those with special needs. I also extend a hand to siblings seeking to release and free themselves from unresolved resentment, anger, or hurt to discover and create lives beyond their wildest imaginings. References "The Pygmalion in the Classroom" Study by Robert Rosenthal and Lenore Jacobson https://sites.tufts.edu/tuftsliteracycorps/files/2017/02/Pygmalion-in-theClassroom.pdf "Differentiated Instruction: Differentiated Instruction Defined and How to Implement It" https://www.learninga-z.com/site/company/what-we-do/differentiatedinstruction#:~:text=Differentiated%20instruction%20is%20the%20 process,and%20helps%20teachers%20personalize%20learning

Siris Raquel Rivas-Verdejo, M.A. CCC-SLP/LD is the owner of Empowering Light Language LLC, a Life Coach, SpeechLanguage Pathologist, Learning-Behavioral Specialist, Feeding Therapist, and Therapeutic Energy Worker. She helps busy people and families communicate more effectively in all areas of their lives, leveraging their differences, gifts, and capacities so they can create phenomenal lives beyond what has been projected and expected of them. 🌐 empoweringlightlanguage.com ✉ empoweringlightlanguage@gmail.com YOUTUBE https://www.youtube.com/@sirisraquelrivasverdejo AMAZON https://www.amazon.com/author/sirisrivas LINKEDIN https://www.linkedin.com/in/sirisrivas/ INSTAGRAM @empoweringlightlanguage SOUNDCLOUD soundcloud.com/sirisrivas SQUARE-FACEBOOK www.fb.com/empoweringlightlanguage

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EDITOR’S LETTER

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FINANCIAL FOCUS

What Happens When You Can No Longer Act as Your Special Needs Child’s Primary Caregiver? By Ryan F. Platt, MBA, ChFC, ChSNC, CFBS PARENTS ALWAYS SEEM TO BE THINKING ABOUT “WHAT’S NEXT” FOR THEIR LOVED ONES, ESPECIALLY WHEN THEY ARE NO LONGER ABLE TO ACT AS THEIR LOVED ONE’S PRIMARY CAREGIVER. PARENTS REPEATEDLY VOICE THEIR CONCERN ABOUT RESPONSIBILITY AND THE WORK IT TAKES TO BE THE PRIMARY SUPPORT PERSON FOR THEIR CHILD WITH A DISABILITY.

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FINANCIAL FOCUS

nfortunately, most parents do not share the daily care responsibility requirements with the next caregiver. This lack of communication causes anxiety for both parents and the next caregiver.

because he has been in charge of caring for him his entire life, but I am now learning that may not be the case.

I had an eye-opening conversation with the brother of an individual with autism. I was meeting with him and his father. His father is in the process of creating a special needs plan designed to care for his son. During this process, we also needed to prepare his eldest son for the role of caregiver when Dad passes away.

Answer: I need a resource. I need a guide who can help me. I need support. I need contact numbers and email addresses. I would also like a binder assembled that has everything I need to know, including government benefits being received, available benefits, explanation of special needs trust, a list of all assets and liabilities, insurance information, passwords, location of important documents, all the necessary legal documents, any tax information that would be applicable, my brother’s daily activities, the people that are involved in his life (and their contact information), Dad’s wishes for my brother’s future, and of course someone I can call that can help me manage all this stuff.

I wanted to provide as many families as possible with the abbreviated transcript of our question-and-answer session because it will provide guardians the roadmap for what you need to create (to ensure your next caregiver will be successful in their role) directly from the mouth of those people who will be stepping into your shoes when you are no longer able to be the caregiver or when you die. Ryan: What do you feel you need to know? Answer: I am not sure. I feel like I don’t know anything, and I also don’t know what I don’t know. I am not even sure where I would start, and that worries me. Ryan: If you had to tell your Dad what you need from him, what would you tell him? Answer: I need a list of resources that are available. My brother may not have everything he needs, and I need to know the resources he does have. I need to know what Dad wants for my brother. I need to have some direction in regard to Dad’s desires for my brother’s future. I have always assumed my dad is an expert on everything concerning my brother

Ryan: What would you need to feel more comfortable and reduce your worry level?

I know that this is just a snapshot of our conversation, but it gives a great picture of what the next generation expects from parents in their planning—Direction, suggestions, expert support, and necessary information to carry on providing support for their loved one. These desires are not much different from what parents want in creating and carrying out their plans. Please review your plan and see if it matches what this sibling says he requires to worry less, or if you don’t have a plan…START. 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 🌐 http://www.aspecialneedsplan.com PHONE-HANGUP 704-326-7910 MAP-MARKER-ALT 101 N. McDowell Street, Suite 120, Charlotte, NC 28204 Exceptional Needs Today | Issue 15 | 63

Tackling the Special Needs Parenting Journey By Hina Kalhoro

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PARENTAL SUPPORT AS A LIFE COACH FOR PARENTS WITH SPECIAL NEEDS CHILDREN AND A MOTHER OF A CHILD WITH A RARE ILLNESS, I UNDERSTAND THE IMPORTANCE OF INSPIRING AND MOTIVATING OTHERS TO FACE THE UNIQUE CHALLENGES OF PARENTING. THIS ARTICLE OFFERS INSIGHTS INTO THE MOST COMMON DIFFICULTIES THAT ARISE WHEN RAISING CHILDREN WITH SPECIAL NEEDS.

s you may know, special needs parenting is a distinctive and enriching experience, demanding unique strategies to ensure the well-being and development of children with diverse abilities. This guide aims to provide insights, resources, and support for parents navigating the challenges and joys of raising a child with special needs. Parenting a child with diverse abilities is a unique and rewarding experience that requires special strategies to ensure growth and well-being. We understand the challenges and joys this experience brings, and this guide is designed to provide you with the necessary insights, resources, and support to navigate this journey.

Understand your child's needs •

Individualized approach: Recognize that each child is unique. Understand their strengths, challenges, and preferences to tailor your parenting style.

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Educational advocacy: Work closely with educators to create Individualized Education Programs (IEPs) that cater to your child's specific learning requirements. Be their advocate, and share your ideas on accommodations and recommendations that work best for your child's unique challenges.

Build a support system •

•

Connect with other parents: Join support groups, find online communities, and download apps to share experiences, advice, and encouragement with parents facing similar challenges. Connecting with other parents in similar situations can be an excellent resource. It's also a great way to release stress and express your thoughts without feeling judged. Professional support: Collaborate with therapists, psychologists, specialists, and special education professionals to ensure your child receives the necessary interventions. Every professional brings their unique perspective to the table when it comes to creating treatment plans, IEPs, and 504s; it's crucial to seek out their consultation.

Practice self-care •

Prioritizing mental health for parents of children with special needs: Caring for a child with special needs can take a toll on one's emotional well-being. Be sure to check

in on your mental health regularly and ask yourself what you need at the moment. If necessary, seek counseling or join support groups, some of which are still available through Zoom for the convenience of special needs parents.

•

Respite care: It's imperative to balance self-care with caregiving to ensure sustained well-being. Luckily, some agencies employ professionals with special needs training available to assist you. If that's not an option you're comfortable with, relying on trusted friends and family members for respite is always a great alternative.

Advocate for rights and empower your child •

Know your rights: Familiarize yourself with local laws and regulations pertaining to special needs, education, and healthcare. Advocate for your child's rights and access to appropriate services.

•

Empower your child: Foster independence by encouraging age-appropriate responsibilities. Equip your child with skills that enhance their self-esteem and autonomy. Celebrate the small wins and recognize their achievements through rewards and recognition.

Find financial support for special needs parenting •

Looking for financial assistance programs, grants, and benefits can significantly alleviate the financial strain associated with special needs parenting. Don't be ashamed to seek help; many community resources, such as non-profits, can help you navigate these challenges.

Socialize inclusively •

Encourage community involvement to foster social connections. Participate in inclusive activities and events that allow your child to interact with peers. This may be a challenge for some parents to integrate their children with "other" children. But small steps and starting a small group can foster possible friendships.

Promote social connections through community involvement •

Encouraging your child to participate in inclusive activities and events is a great way to foster social connections. Exceptional Needs Today | Issue 15 | 65

PARENTAL SUPPORT Although it may be challenging for some parents to integrate their children with "other" children, starting with a small group and taking small steps can lead to possible friendships.

Educate others •

Promote awareness and understanding of exceptional needs within your community to create a supportive and inclusive environment. One effective method to achieve this goal is to create a "Special Education Chair" position within the Parent Teacher Association (PTA). Alongside this, consider drafting a letter to your local city council members requesting that they organize more inclusive community events.

Celebrate achievements, big and small •

accomplishments, regardless of how small they may seem. Positive reinforcement contributes to your child's sense of achievement.

•

Create a positive environment: Cultivate a home environment emphasizing love, acceptance, and encouragement. A positive atmosphere can significantly impact your child's overall well-being.

Conclusion Although special needs parenting is a journey filled with challenges, it is also marked by incredible moments of growth and joy. You can navigate this journey with resilience and positivity by understanding your child's needs, building a robust support system, practicing self-care, advocating for your child, and fostering inclusivity. Remember, you are not alone; a vast support network is ready to assist you on this extraordinary parenting adventure.

Acknowledge progress: Celebrate milestones and

Hina Kalhoro is a life coach based in Southern California specializing in working with families, caregivers, and mothers of special needs children. Hina teaches her clients how to incorporate self-care practices into their daily routines and the positive impact they can have on reducing burnout. It's easy to get caught up in the responsibilities of taking care of others, often at the expense of taking care of oneself. Hina's experience raising her son with a rare illness inspired her to become a life coach, and she is now committed to helping others navigate these challenges confidently. 🌐 https://www.ctacoaches.com/hinakalhoro/

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MY WORD

Invisible Disability By Carmen A. Brown I love my Daddy, and I know that my Daddy loves me, We both have something uniquely in common It’s what some may know as an invisible disability

My Daddy speaks very fast, and it’s not always clear His words get jumbled, and the wrong ones come out It is then I hear Mommy say, “Oh, dear”

You don’t see it when you look at us Sometimes, our reactions or words may not come out right Our intentions are always pure Please understand that this is part of my Dad’s injury

My brain goes faster than a roller coaster Grabbing words at every loop and turn My mouth has trouble forming those words, and my body gets tense I run and scream to get the feeling out, and then I’m able to learn

My Daddy has a TBI (Traumatic Brain Injury) I have ASD (Autism Spectrum Disorder) It’s a lot of letters, accommodations, therapies, and appointments But we figure it out day by day because we’re a family My Daddy needs it quiet to make his brain not hurt He needs things organized, color-coded Lots of reminders and sticky notes Without this system, he is always on alert I love to dance and sing With my volume set on max I make messy piles and crashing noises This is how I can relax We both can’t always communicate our needs The speech part of our brain is affected It’s as frustrating as can be Despite this, we find other ways to stay connected

My Daddy is a hero, you see He served in the United States Army His cape was green, and he answered the call To keep each of us safe, one and all He got his injury from one of his times overseas He came back home and Now has a harder time playing with me It makes me sad to say that And I know that it’s not my fault We both keep trying every day Making memories Mommy puts in a vault I love my Daddy, and I know that my Daddy loves me Please be patient with us and our invisible disability

Carmen A. Brown, native Arkansan, now Floridian, has a passion for helping people and advocating for those who don’t have a voice. She worked in the insurance field for nearly 15 years prior to having a career change to the ABA field. As a mother of three children, all uniquely on the autism spectrum, she shares her knowledge, resources, and stories with other families on a weekly segment called “Coffee with Carmen.” She is also an active member of the Developmental Disabilities Council (DDC), Special Needs Advisory Council (SNAC), Autism Society of Greater Orlando (ASGO), and Talk About Curing Autism (TACA). Exceptional Needs Today | Issue 15 | 67

Nature Notes

First-Day Hike to Enrich Differently Abled Families By Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA 68 | Exceptional Needs Today | Issue 15

STAYING FIT AND HEALTHY RECENTLY, I READ ABOUT AN INTRIGUING CONCEPT CALLED A FIRST-DAY HIKE THAT I WANTED TO TALK ABOUT WITH YOU ALL. CREATED BY THE NATIONAL PARKS SERVICE AND ADMINISTERED THROUGH THE EXTENSIVE U.S. STATE PARK SYSTEM, THE FIRST-DAY HIKE TAKES PLACE ON JANUARY 1ST. A FIRST-DAY HIKE IS INTENDED TO BRING PEOPLE OUTSIDE IN THE SPIRIT OF EXERCISE, CONNECTION WITH OTHERS, AND NATURE. IT IS ABOUT STARTING THE YEAR OFF RIGHT.

ccording to the U.S. State Parks website, each state park provides information about guided and individual trail walks and challenges. As the website states, "America's State Park programs are committed to promoting outdoor recreation in hopes to help address obesity, especially in children. Furthermore, exercise and outdoor activities rejuvenate the mind and body, promoting overall mental and physical health and wellness. Many believe that time spent in nature enhances creativity and lifts our moods." Check, check, and check on the nature scale. Here is why. Check One. Engaging in regular exercise contributes to obesity reduction. Exercise and physical activity outdoors are shown to have positive impacts on reducing rates of obesity for both children and adults (Chigbu et al., 2020; Kahin et al., 2020; Vandoni et al., 2021). Maybe it is also more fun than indoor exercise? Check Two. Research, and there is a plethora of it, clearly identifies the positive mental and physical health benefits of being outside for children and adults (Houlden et al., 2018; Mygind et al., 2019). There is a term called FBNA (Family-Based Nature Activities), which is understood to strengthen family connections and even help children become better stewards of the land when they grow up (Izenstark & Ravindran, 2022). First-Day Hikes are most definitely an FBNA!

safe option. For some children with sensory challenges, nature may be overwhelming—the sounds, smells, and lighting may elicit dysregulation. Never one to shy away from a challenge, I would like to offer some ways in which a First-Day hike could be a positive experience that can be repeated time and again. The National Park Service has sections of its website devoted to accessibility issues. This is a great place to start when considering planning for and partaking in a First-Day hike. The websites are below:

• •

https://www.nps.gov/subjects/accessibility/index.htm https://www.nps.gov/subjects/accessibility/plan-yourvisit.htm

Some states and counties also have similar accessibility pages on their park sites. I am a Washington State resident, and my county park sites are pretty robust about providing accessibility information. For me and other Washingtonian readers, the go-to site is https://www.parks.wa.gov/156/ADA-Recreation. I would never presume to say all accessible paths are equal, so planning and perhaps, if feasible, a surveillance trip in advance of a planned hike event could be extremely helpful in determining whether the level of accessibility in the park meets your and or/your children's needs.

Check Three. Being in nature does make us more creative and curious, and, for many, it is uplifting. (Tillmann et al., 2019). What can you do on a First-Day Hike if the weather is cooperative and safe for you and your children to be outside? Foremost, you can go outside because simply being outside is health-promoting. Depending on where you live and the weather conditions on January 1st, you can look for animals and listen to birds during your family's walk. You can play a game to identify the colors and shapes you see. You can sing, laugh, and just BE. So far so good, right? The concept of a First-Day hike is excellent. It can be the catalyst for a second, third, fourth, etc. hike in a park, and you and your family feel connected. But there is a "But!" I think is very important to share. For many families, their child's exceptionalities may deter them from going to a national, state, or municipal park. The trails may not be navigable or feasible for children (or their caregivers) using any mobility device. If elopement is a concern, and it may be for children with autism, a hike in a state park may not be a

Let's say you determine that a municipal, state, or national park is not a good option for your First-Day Hike as the level of accessibility it offers does not meet your family's needs. Where else can you mark the New Year with a walkabout in nature? How about a botanic garden? Taking a romp through a botanic garden is fun for many families and is a wonderful alternative to a hike in the woods. You are checking all the boxes we discussed: getting exercise, enjoying the benefits of nature, and finding opportunities to be curious as a family. Some botanic gardens do not have an admission fee, and others have certain days with no-fee access, so check that out. I think a First-Day Hike at a botanic garden is a viable option. In Exceptional Needs Today | Issue 15 | 69

STAYING FIT AND HEALTHY accordance with ADA regulations, botanic gardens have paths that are either paved or well-groomed with crushed gravel (or the like). Unlike dirt paths in the woods, paved paths are more predictable and generally easier to navigate with mobility devices if needed. Recently, I visited three botanic gardens: the San Antonio Botanical Garden in San Antonio, Texas, the Morikami Garden in Delray Beach, FL, and the Red Butte Garden in Salt Lake City. All three are gorgeous, and all three have wide paved pathways. Some of Red Butte's paths are pretty sloped, as the garden is on a hillside. I hope you consider implementing your family brand of FirstDay Hikes and making it a tradition! If you are not able to go out on the first of the year, maybe select another date on the calendar and make spending time together outside your special tradition. References Chigbu, C. O., Berger, U., Aniebue, U., & Parhofer, K. G. (2020). Physical activity and outdoor leisure time physical exercise: A population study of correlates and hindrances in a resource-constrained African setting. Journal of Multidisciplinary Healthcare, 1791-1799.https://doi.org/10.2147/JMDH. S281518 Houlden, V., Weich, S., Porto de Albuquerque, J., Jarvis, S., & Rees, K. (2018). The relationship between greenspace and the mental wellbeing of adults: A systematic review. PloS one, 13(9), e0203000. https://doi.org/10.1371/ journal.pone.0203000 Izenstark, D., & Ravindran, N. (2022). Associations between childhood family based nature activities and family relationship quality in emerging adulthood. Family Relations. https://doi.org/10.1111/fare.12714 Kahin, S. A., Murriel, A. L., Pejavara, A., O’Toole, T., & Petersen, R. (2020). The high obesity program: a collaboration between public health and cooperative extension services to address obesity. Preventing Chronic Disease, 17. https://doi.org/10.5888/pcd17.190283 Mygind, L., Kjeldsted, E., Hartmeyer, R., Mygind, E., Bølling, M., & Bentsen, P. (2019). Mental, physical and social health benefits of immersive natureexperience for children and adolescents: A systematic review and quality assessment of the evidence. Health & Place, 58, 102136. https://doi. org/10.1016/j.healthplace.2019.05.014 Tillmann, S., Button, B., Coen, S. E., & Gilliland, J. A. (2019). 'Nature makes people happy, that's what it sort of means: children’s definitions and perceptions of nature in rural Northwestern Ontario. Children's Geographies, 17(6), 705-718. https://doi.org/10.1080/14733285.2018.1550572 Vandoni, M., Codella, R., Pippi, R., Carnevale Pellino, V., Lovecchio, N., Marin, L., ... & Calcaterra, V. (2021). Combatting sedentary behaviors by delivering remote physical exercise in children and adolescents with obesity in the COVID-19 era: A narrative review. Nutrients, 13(12), 4459.

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. 🌐 www.amywagenfelddesign.com 🖥 workjournal.org/nurture-through-nature

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EDITOR’S LETTER

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PARENTAL SUPPORT

Healthy Parenting

When Raising Differently Abled Children By Priya Pasumarthy, MS

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EMOTIONAL SUPPORT

MOTHERHOOD IS A BLESSING TO EVERY WOMAN OUT THERE. IT UPLIFTS THE STATUS OF A WOMAN AS IT OPENS A NEWER DIMENSION TO HER VERY EXISTENCE. SURPASSING RACE, LANGUAGE, CULTURE, CLASS, AND CONTINENTS…MOTHERHOOD IS MORE OR LESS THE SAME. HOWEVER, THIS EXPERIENCE DEVIATES WHEN RAISING CHILDREN WITH DIFFERENT ABILITIES. FOR SOME, IT COULD STILL BE EQUALLY REWARDING, WHILE FOR OTHERS, IT IS TRAUMATIC.

ased on the severity of their child’s diagnosis, some mothers slip into helplessness or hopelessness. One or a series of contributing systemic barriers (intrinsic and extrinsic) might result in depression. Being unable to identify, understand, accept, or not be able to process this situation could disturb conceptual and emotional motherhood, which could eventually disrupt the mother and her family’s balance. It is crucial to become aware of the importance of mental health. Using the lens of constructivism over criticism, we will be discussing parenting tips with difficult experiences. This article hopes to help parents who face difficult parenting experiences by showing possible ways to reconstruct themselves when knocked down by life. Disabilities can be defined as physical or mental conditions that limit a person's functionality to varying degrees. The term encompasses both visible (physical) and invisible (mental) ones. The percentage of disabled people is approximately 26% (one in four adults) in the U.S. and around 15% experience disabilities across the world. Physical disabilities tend to be conspicuous; they can often be diagnosed when manifested, and thus, the affected individual can get supports on time. The mother and family can also be equipped on time, if necessary. Commonly known physical disabilities are cerebral palsy, spina bifida, etc. The invisible disabilities can take longer to be diagnosed and supported. It might interfere with a person’s ability to perform and affect the individual personally. These individuals might fall behind compared to their typical peers in one or more domains. When lucky, a trained eye would be able to point them in the right direction. Commonly known invisible disabilities are sensory processing disorders, cognitive dysfunction, etc. Every parent’s dream is high for their child. The dream is that their child is smart, gifted, multi-talented, goes to college, is a superhero, and so forth. Parents do their best to nurture their children. Every step is taken to give a quality life. This is the norm. Once it comes to raising differently abled children, that dream usually shifts. Parenting them is altogether a different scenarExceptional Needs Today | Issue 15 | 73

EMOTIONAL SUPPORT culture and religion has its pros and cons; it is on us to gauge smartly and make sure it helps in the reconstruction of self. If one culture and religion doesn’t have a few fundamentals, one could superficially borrow from others and vice versa.

3. Future: While parenting a typical child, the future is more

vivid. Not only for the parents but also the child usually participates in their future planning. The child has a say in their future and is a decision-maker as well. What needs to be done or how the goals can be achieved is pretty clear. The child becomes an adult and is able to take up their own management.

io. It depends on the personality and nature of the caregivers. Some do fine and can smoothly step into the role. For others, many factors trouble their motherhood. Let us take a closer look at what these barriers that could possibly undermine motherhood might be broadly classified as:

1. Fear: Fear (from both within and outside) is a prime barrier that undermines motherhood. Even prior to motherhood, a woman is expected to be graceful and docile. This expectation gets carried inherently into the role of a mother, which is perceived to be Utopian. She needs to be perfect as a daughter, woman, wife, and Mother. She should always strive for that nurturing perfection. A disabled child with disruptive behaviors might reflect poor mothering to those outside the family. It is assumed that something is wrong with the child and the mother is blamed. The fear of blame, shame, and unattainable perfection exists almost continuously. Fear shackles you and makes you voiceless and spiritless.

2. Culture and worship: Knowingly or unknowingly, the

culture and worship we belong to rule us from within. It does have an impact on upbringing and is the very core of a person. For example, we know the differences between Occidental and Oriental cultures and how they would shape their people, the family unit, and the society. Every

However, this is not the same case when parenting differently-abled children. Due to delays or the absence of a few or several milestones, the future stays at a rudimentary level for a while. There could be struggles with schooling, Individualized Education Program (IEP), services, and finding the right providers. It could be costly and time-consuming. It could take a toll on the family. Often, parents get entangled in the next steps. A complete understanding of the diagnosis and the system's interactions (school, IEP, laws) would be pivotal. By setting realistic expectations, the future begins to become conspicuous. It can be summarized from the above that the barriers, including fear, culture, and future, do have an ongoing impact; they place stress on a mother and undermine motherhood. A mother should redefine herself and not get defined by fear or the negative impacts of culture and religion. A mother doesn't have to live up to others' expectations.

A mother doesn't have to live up to others' expectations. Using the lens of constructivism over criticism by identifying, understanding, accepting, and processing, one needs to smartly gauge and reconstruct themselves. One needs to reflect and take care of their mental health. For all those mothers who face a difficult experience, one needs to gauge/reflect on these barriers (intrinsic and extrinsic) or a series of systemic barriers that coexist. These will be pivotal in contributing towards a healthy parenting experience while raising differently abled children.

Priya Pasumarthy, MS, is a health care provider and author of Our Little Promise (2022) and Halloween At Luke’s (2019). She lives in California with her family.

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A Faith-Integrated Guide from Personal and Professional Experience

EDITOR’S LETTER

This book is for anyone who wants to better understand autism or neurodiversity from a family that is living it or for anyone who wants to improve their ability to serve, support, advocate or include those with autism. This book intends to create hope and understanding and the promotion of healthy neurodiverse marriage and families by educating, equipping and providing effective strategies to those who desire to support, include, minister or advocate for families that are neurodiverse or have special needs. This book will provide a personal and professional experience of a family moving from surviving to thriving.

Embracing the Autism Spectrum: Finding Joy & Hope Navigating the NeuroDiverse Family Journey is a gift to any parent that has ever felt alone on this journey. This is an honest and intimate account of how a diagnosis can alter your expectations of the world and yet help you see more clearly. Any family that has a member that has a neurodiverse diagnosis will find refuge in these pages.

I am honored that Dr. Stephanie asked me to review this book. I found myself reading the entire book and literally laughed, cried, raged and rejoiced for Stephanie and her family. This is a must read for every Christian family who has a special needs child, especially on the autism spectrum. I give my highest recommendation both clinically and spiritually for this book.

JEANETTA BRYANT Founder / CEO, Abilities Workshop Inc.

F.G. HUTCHINGS III Ed.D, LPC, LMFT Licensed Psychologist

Order your copy today!

www.christianneurodiversefamilies.com

Embracing the Autism Spectrum: Finding Joy & Hope Navigating the NeuroDiverse Family Journey walks you through the challenges the family faced in a neurodiverse family system, during and after diagnosis. As a Speech Therapist who has worked with children of all ages that are on the spectrum, early diagnosis and early intervention is imperative for the child’s future success. Parents are struggling and they need support from the school district, and they need to be able to trust the professionals as well. An open relationship between parents and school personnel with ongoing dialog will only help the child succeed even more. Education is key, as well as validation for the journey on which people find themselves. I hope this book is a lifegiving addition to that journey. CAROL RELLER

Exceptional Needs Issue 15 | 75 Retired SpeechToday Language |Pathologist

Ways Vocational Rehabilitation Can Help You Reach Your Goals By Seva Reilly

WHETHER YOU WANT TO EARN A STABLE INCOME, DEVELOP VALUABLE SKILLS, BUILD PROFESSIONAL NETWORKS, OR ALL OF THE ABOVE, BECOMING EMPLOYED MAY HELP YOU REACH THESE GOALS. HOWEVER, AS A PERSON WITH A DISABILITY, YOU KNOW THE UNIQUE HURDLES TO EMPLOYMENT THOSE WITH EXCEPTIONAL NEEDS MAY FACE. MAYBE YOU NEED JOB READINESS OR SKILL TRAINING, ACCOMMODATIONS AT WORK, OR ASSISTIVE TECHNOLOGY TO HELP YOU DO THE JOB.

our Individual Education Program (IEP) from secondary school may have provided a great deal of support during your primary years of education, but what support is available after you graduate high school and dive into the new challenges posed by adulthood? One invaluable resource is Vocational Rehabilitation (VR). You can begin receiving VR services as a minor; for instance, in Florida, youths from 14-21 years old can receive Pre-Employment Transition Services to foster career exploration in preparation for entering the workforce (About Students and Youth Programs, n.d.). However, you don’t age out of a breadth of VR services; this point is critical. I have found that many of our clients experience a drastic reduction in available resources after graduating high school, making it hard to figure out their

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"next steps" in life. This is where VR comes in. Suppose you have a mental and/ or physical disability hindering your employability. In that case, Vocational Rehabilitation (VR) can help bridge the gap between where you are now and where you want to be. VR is a state-level program funded by taxpayer dollars; its goal is to help job seekers with disabilities obtain and maintain integrated, competitive employment. This means you will be working in a setting where both individuals of all abilities work while earning a salary that complies with the legal requirements for pay in your state and industry. VR offers a variety of services to help you, including:

SKILLS FOR LIFE

•

Vocational evaluations, assessments, and interviews to help you determine what careers are a strong fit for your knowledge, skills, abilities, and interests;

•

Job search guidance, including help with resumes and cover letters, professional networking, and interview skills;

•

Employer-site experiences such as on-the-job training to help you gain relevant job skills;

•

Funding and arrangement for transportation services, appropriate work attire, assistive technology, and interpreters;

•

Employment counseling to help you keep and thrive in your job;

•

And more, depending on the client's needs and situation.

How to register with Vocational Rehabilitation (VR)

cess where you will be required to submit critical documents and meet regularly with the VR staff at your local office.

•

Your first step is finding your state's Vocational Rehabilitation program. In Florida, for example, the website is rehabworks.org, and VR is a division of the Florida Department of Education.

•

Next, find your nearest area office. Most states will list a map of all offices and units. In Florida, area offices and addresses are listed on this page.

•

Next, contact your local VR office and find out how they would like you to apply. Again, referencing Florida, anyone interested in receiving VR services must fill out this application form and either mail, scan, or hand deliver it to their office.

•

After your office receives the application, they will schedule a meeting with you to determine your eligibility for services. Be ready to present relevant documentation (IDs, SSDI status, Medicaid and/or Medicare eligibility, medical or psychological evaluations you've received, etc.).

•

If you are eligible for services, you will be assigned a VR Counselor to assess your needs and determine what support you need to reach your employment goals. You will also complete an orientation to understand your rights and responsibilities as a VR customer.

•

Your VR Counselor will work with you to create an "Individualized Plan for Employment," or IPE (which, as you might guess, gets confused with the secondary school IEP). The VR IPE will include services you, the client, may need.

•

Now the IPE is created, it's up to you to start utilizing the resources included.

•

Throughout the process, stay in touch with your VR Counsel-

Ready to get started? Registering with VR is a multi-step pro-

VR is a state-level program funded by taxpayer dollars; its goal is to help job seekers with disabilities obtain and maintain integrated, competitive employment.

Exceptional Needs Today | Issue 15 | 77

SKILLS FOR LIFE or, as the IPE is a living document. You can request amendments to the plan as you start your path to employment!

•

Later on, after you have achieved stable employment, VR will work to close out your case.

Four tips when partnering with Vocational Rehabilitation (VR) Vocational Rehabilitation is like a health insurance provider. Health insurance can reimburse in-network providers; however, they do not directly provide medical care. Similarly, VR will reimburse several vendors—the equivalent of medical providers—for services you need, with each vendor offering different services. At ASD Adult Achievement Center, we specialize in helping adults with high-functioning autism spectrum disorder (HFASD) develop skills and strategies for employment and independent living success. We communicate with area offices throughout the State of Florida's Vocational Rehabilitation network on behalf of our clients. These are some of the tips based on our experiences working with VR.

1. Advocate for your needs VR's guiding principle is that any services provided are the customer's choice. You, the customer, have the ultimate say in what services you want and need. If you feel you would be better served by working with a different VR counselor or VR vendor, you can request those changes to your IPE.

2. Practice patience Many VR offices are processing and managing dozens of cases. In Florida, it can take up to 90 days (or more) to process a client's case from start to finish.

3. Be persistent Persistent and consistent communication with the office is key to moving along the registration process. Know your VR counselor's name and contact information, as well as that of the office and various VR techs. Know the supervisor for your VR counselor, who you can contact if you need to escalate an issue. You can contact the VR Ombudsman Office for additional support if the VR office is not able to resolve your issue.

4. Remember you can request IPE amendments Your IPE contains your job goal and the services needed to reach that goal. However, as you learn more about yourself, you may need to change your job goal or receive additional services. Openly communicate these changes with your VR Counselor! I hope the information conveyed here helps demystify Vocational Rehabilitation, how it can help you, and how to register. If you believe you are eligible for services, I encourage you to register so you have a VR case created and ready, even if you choose not to use all the services offered. It is much easier to amend an existing case than to create an entirely new one. VR is just one of the resources available to individuals with disabilities, but the services provided and funded by VR help all job seekers have an equal chance at meaningful and sustainable employment in adulthood. To learn more about the services a VR Vendor can provide, you can learn more about the ASD Adult Achievement Center at http://asdachievement.org/. References About Students and Youth Programs. (n.d.). RehabWorks. https://www. rehabworks.org/student-youth/student-youth.html#:~:text=Beginning%20 at%20age%2014%2C%20students,counselor%2C%20or%20 self%2Dreferral North Carolina Department of Health and Human Services. (n.d.). The VR Advantage. https://files.nc.gov/ncdhhs/documents/files/The%20VR%20 Advantage.pdf RehabWorks. (n.d.). RehabWorks. https://www.rehabworks.org/ RehabWorks. (April 25, 2022). Area Offices. https://www.rehabworks.org// contact/area-offices.html RehabWorks. (2019, Nov 9). VR Steps: A Customer's Guide. RehabWorks. https://www.rehabworks.org/customers/vr-steps.html

Seva Reilly is a Program Coordinator and Employment Specialist with ASD Adult Achievement Center, 501(c)3. She provides administrative support in enrolling students in the center's programs for adults with high-functioning autism spectrum disorder (ASD). As an Employment Specialist, she provides career readiness training and coaching for students actively seeking employment. A recent UCF graduate with a Bachelors in Communication Sciences and Disorders, Seva brings a variety of experiences working with individuals with disabilities, as well as four years experience as a volunteer coordinator with the UCF student organization Aphasia Family UCF, to her role at the ASD Adult Achievement Center. LINKEDIN https://www.linkedin.com/in/sevareilly/

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EDITOR’S LETTER

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PARENTAL SUPPORT

By Amy KD Tobik

e are grateful to work with such supportive contributors and supporters committed to advocacy. Together, we have shaped Exceptional Needs Today into a thriving, award-winning magazine. We have exciting plans to continue to expand in 2024 as we showcase leading voices and resources.

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As many of you know, Exceptional Needs Today received the Gold Award from the prestigious Mom's Choice Awards, honoring excellence several years ago. Today, we share this recognition. Please help us congratulate the following people selected for this special recognition.

EXCEPTIONAL ADVOCATE

Top Audiology Writer Dr. Dawn Aerts, AuD Dawn is an audiologist and founder of Helpful Hearing. She is an expert in pediatric hearing technology and recognized the need to increase awareness and access to remote microphone technology outside the populations of individuals with hearing loss. Dawn received her Doctorate of Audiology in 2007 from Salus University and draws on almost 20 years of clinical and hearing aid industry experience as a pediatric audiologist. She cultivated a passion for educating parents and professionals on the benefits of remote microphone technology. She aims to educate and support these families to help their children succeed.

Top Inclusion in The Arts Advocate Dr. Rhoda Bernard, EdD Rhoda is the Founding Managing Director of the Berklee Institute for Accessible Arts Education and the Assistant Chair of Music Education at Berklee College of Music. She holds a Bachelor of Arts cum laude in Government from Harvard University and a Bachelor of Music with academic honors in Jazz Voice from New England Conservatory. She earned both her Master of Education and Doctor of Education degrees from the Harvard Graduate School of Education. Dr. Bernard regularly presents keynote presentations and research at conferences throughout the United States and abroad, and she provides professional development workshops for educators in local, national, and international forums. Her work has been published in several book chapters and numerous peer-reviewed journals, and she serves on several editorial boards. Dr. Bernard received the Berklee Urban Service Award (2017), the Boston Conservatory Community Service Award (2011), the Boston Conservatory Faculty/Staff Spirit Award (2007), and the Outstanding Dissertation Award, Honorable Mention (Second Place) from the Arts and Learning Special Interest Group of the American Educational Research Association. An active arts education advocate, she is the immediate past chair of the Arts Education Advisory Council of Americans for the Arts, and she serves on their speakers’ bureau. 🌐 college.berklee.edu

Top Community Support Carmen A. Brown Carmen, a native Arkansan, now Floridian, has a passion for helping people and advocating for those who don’t have a voice. She worked in the insurance field for nearly 15 years prior to having a career change to the ABA field. As a mother of three children, all uniquely on the autism spectrum, she shares her knowledge, resources, and stories with other families on a weekly segment called “Coffee with Carmen.” She is also an active member of the Developmental Disabilities Council (DDC), Special Needs Advisory Council (SNAC), Autism Society of Greater Orlando (ASGO), and Talk About Curing Autism (TACA).

Top Disability Advocate Dr. Joscelyn Ramos Campbell Joscelyn is an Award-Winning National Spokesperson, Bilingual Disability Advocate, and Special Needs Pastor at Hope International Church in Groveland, Florida. A former federal government public relations executive, she is the Founder of Hope Torchlighters, a nonprofit organization that helps to provide stability, wellness, advocacy, and empowerment to special needs and neurodiverse families. As a recognized multimedia pioneer, she is the Co-Host of the Chicas Chatting Podcast. Recently, Joscelyn received the Presidential Lifetime Achievement Award for Selfless Service. She was the 2nd recipient to receive the award. Joscelyn was named a Top 10 Inspiring Latina Mom Blogger to Follow. Joscelyn is leading a disability ministry while having an active disability. She is certified in theology and disability ministry via The Christian Institute on Disability. She is a sought-after spokesperson who travels across the U.S. for speaking engagements and conferences and holds leadership capacities for various organizations. 🌐 joscelynramoscampbell.com

Exceptional Needs Today | Issue 15 | 81

EXCEPTIONAL ADVOCATE Top Education Writer John Civita, MS Ed John is the Director of Transitions Programming for the Winston Preparatory School. Winston Transitions is an extension of the Winston Preparatory School educational experience with NYC and San Francisco campuses. He is the founding director of Winston Transitions, a program for young adults aged 17-21+ with learning differences focused on building academic skills while developing life and work readiness. His experience includes 20 years of working in education, emphasizing language processing, non-verbal processing, and executive functioning difficulties. He is also experienced in supporting adults with learning differences and their families with a particular interest in sustainability, employment, goal setting, and problem-solving. 🌐 www.winstonprep.edu

Top Autism Support Writer Samantha Els, BS Samantha is the cofounder of Sam’s Sibs Stick Together: an initiative dedicated to providing support and accessible research to siblings of people on the autism spectrum. Sam graduated from Stanford University with a BS in human biology, focusing on brain health and health policy. She was awarded the 2022 Autism Science Foundation’s Caryn Schwartzman Spirit Award for advocacy, along with the late Suzanne Wright, co-founder of Autism Speaks. Sam is pursuing her goal of playing rugby for the South African national team. 🌐 www.samssibssticktogether.com

Top Advice Columnists Jeremy and Ilana Hamburgh Jeremy and Ilana are friendship and dating coaches who empower autistic and neurodivergent adults to find community, make friends, start dating, and find love. 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 adults into the social lives they want and deserve. Their flagship program is called Social Life 360, and it's like nothing else in the autism and neurodivergent world: It combines a warm and inclusive commu-

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nity, private and group coaching, and confidence and social skills building that uses formulas, diagrams, and step-by-step processes which allow a differently wired brain to observe, understand, and engage with the social world.. 🌐 MyBestSocialLife.com

Top Special Education Solutions Carli Haskovec, MA, EdS Carli began her career as a high school special education teacher. She now serves her local Board of Education as a Countywide Behavior Specialist. She works as a special education adjunct professor at several universities and teaches GED classes at her local community college. Carli is also pursuing her Doctor of Education in Special Education. She lives in Florence, Alabama, with her husband of 23 years. She has two sons, a Sophomore at Mississippi State University and a Junior in high school.

Top Child Safety Advocate Ginger Healy, MSW, LCSW Ginger is a clinical social worker with almost 30 years of experience in the field. Ginger has worked as a child abuse investigator, hospital social worker, and school therapist. She spent 15 years as the social service supervisor at an international adoption agency and was able to travel to provide support for orphanages all over the world. This job continues to inform her work on attachment and trauma needs in children. She is currently the director of programs for the Attachment & Trauma Network. She co-anchors the podcast “Regulated and Relational” and speaks nationwide on trauma-informed schools, therapeutic parenting, and community engagement. Ginger is married and has four children who have been her greatest teachers about developmental trauma and special needs. She loves to travel and read. 🌐 www.attachmenttraumanetwork.org

Top Parenting Coach Dr. Mary H. Jones, MD, FAAP Mary is a physician and PCCI-trained life and leadership coach. She believes there is greatness in each of us and is passionate about equipping and empowering women to reach their fullest potential. Throughout her life and ca-

EXCEPTIONAL ADVOCATE reer, she has worked to empower and equip women and girls to be their best selves. Each day, Dr. Jones has had the privilege of coaching amazing women who are reaching their goals and fulfilling a compelling vision for their lives. Her vision is to see women living out their purpose and effecting change in their own spheres of influence.

Top Exceptional Voice Kaelynn Partlow, RBT Kaelynn is 25 years old and was diagnosed with autism at 10 years old. She lives in Greenville, SC, and has been employed at Project Hope Foundation as a Registered Behavior Technician for the last seven years, working with middle and high-school-aged clients. Kaelynn has published several autism advocacy articles and recently participated in the Netflix series Love on The Spectrum. Her Instagram and TikTok accounts are nearing 200,000 followers, with multiple videos reaching millions of views. She enjoys spending time with family and working with her dog to do competitive obedience shows with the American Kennel Club in her spare time.

Top Exceptional Needs Educator Rebekah Poe, MS, Med Rebekah is an award-winning special education teacher and national teaching conference presenter with over a decade of experience in the special education field. As an educator, Rebekah focuses on providing equitable education and establishing connections to students of all ability levels in an inclusive setting 🌐 www.RebekahPoeTeaching.com

Top Therapy Support Kate Rosenthal Kate is the Marketing and Events Manager at PAWS for People. PAWS’ mission is to improve the lives of people by lovingly providing individualized, therapeutic visits with specially trained volunteers and their certified gentle, affectionate pets. Kate’s experience includes managing PAWS programs for children, including PAWS Autism Initiative and PAWS for Reading. 🌐 www.pawsforpeople.org

Top Board-Certified Behavior Analyst Jagmeet Sangha Jagmeet is a Board-Certified Behavior Analyst. She has worked in homes and schools for over a decade, providing applied behavior analysis (ABA) services to children, supporting educators, and offering parent training consultations to caregivers. Jagmeet is invested in educating the community and helping families and individuals receive top-quality behavior intervention services. Jagmeet uses the science of ABA to promote well-being and advance individuals, organizations, and society through connection, education, and behavior science. Her organization, Behavior Pivot Consulting, works with employees and employers to create neuro-inclusive communities within the workplace by focusing on identifying and building on individual strengths, promoting self-advocacy, and offering person-centered solutions related to workplace wellness. 🌐 www.behaviorpivot.com

Top Parenting Solutions Jan Stewart Jan is a highly regarded mental health and neurodiversity advocate, author, and recipient of the prestigious Mom's Choice Award®. Her best-selling memoir Hold on Tight: A Parent's Journey Raising Children with Mental Illness describes her emotional roller coaster story of parenting two children with multiple mental health and neurodevelopmental disorders. Her mission is to inspire and empower parents to persevere, have hope, know they are not alone, and 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 on autism, and was previously Vice Chair at the 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

Exceptional Needs Today | Issue 15 | 83

EXCEPTIONAL ADVOCATE Top Autism Advocate Kate Swenson Kate, the Founder of Finding Cooper's Voice and the nonprofit The More Than Project, is a mother to four children, a wife, and a proud Minnesotan. She writes and creates videos regularly about her life as a mother and an autism advocate for Facebook, Instagram, and her website, Finding Cooper's Voice. Her book, Forever Boy, A Mother's Memoir of Autism and Finding Joy, is available now and highlights the transformation that she went through after her son's diagnosis. Her mission is simple. Help parents see the joy in the secret world of autism.

Top Inclusion Advocate Nate Trainor Nate is a passionate inclusion advocate, captivating presenter, and accomplished author of Nate’s Triumph: Presuming Competence and the Fight for Inclusion. With a deep commitment to promoting diversity, equity, and inclusion in all aspects of life, Nate dedicates much of his energy to creating inclusive spaces and empowering individuals from all walks of life. Nate also enjoys getting a cold drink with friends and traveling.

Top Parenting Support Adrian H. Wood, PhD Adrian H. Wood, PhD., is a rural Eastern NC mother of four, one with extra special needs. Past preschool teacher, nanny, children's ski instructor, early interventionist, college professor, early childhood researcher, wife, and fulltime mama. In writing after a 20-year hiatus, she offers personal glimpses where satire meets truth, faith meets irony, despair meets joy, and this educated debutante escapes the laundry and finds true meaning in graceful transparency. 🌐 talesofaneducateddebutante.com

2023 BOOK AWARDS Nature-Based Allied Health Practice, Creative and EvidenceBased Strategies By Amy Wagenfeld and Shannon Marder

See ME: The Invisible Autistic Boy By David Petrovic

15-Minute Focus: Regulation and CoRegulation: Accessible Neuroscience and Connection Strategies that Bring Calm into the Classroom By Ginger Healy

The Happy Clam By Rosemary A. Schmidt

Amy KD Tobik, BA, is the editor-in-chief of Exceptional Needs Today magazine. She coordinates and directs an impressive group of doctors, therapists, and writers to provide expert guidance and support for special needs families. A graduate of Sweet Briar College in VA, Amy’s experience includes more than 30 years of writing/editing monthly magazines, newspapers, technical documents/manuals, books, and websites. Her special interests include advocating for children, special needs families, and education. She is the CEO of Lone Heron Publishing, LLC. 🌐 exceptionalneedstoday.com

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EDITOR’S LETTER

Exceptional Needs Today | Issue 15 | 85

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