Special Needs Living March 2021 Digital Issue by Uniquely You

living

Special Needs

March 2021

Indianapolis & Surrounding Areas

ON THE COVER

Aura Roblero, Marlon Cabrera, Ernesto, Marlon, Ivania Photos by: Heather Gregg – 21 Vines Photography

Inside: The Access Pass Travis Breeding’s Shares his Story Meet the Greco Family How to Communicate a Difficult Diagnosis Sponsor Spotlight: K1ds Count Therapy Sibling Perspective: Megan and Claire Strauss Pioneer Parents: Remembering those who Passed Creating Academic Goals Why Do I Need a Special Needs Trust Autistic Abilities Local Events and More

CONNECTING - INSPIRING - EDUCATING - FAMILIES WITH SPECIAL NEEDS

2 Special Needs Living • March 2021

I M P O RTA N T

N UMBE R S 317-977-2375

317-257-8683

Arc of Indiana www.arcind.org

AREA DIRECTOR PUBLISHER

Jamie McCabe jamie.mccabe@n2pub.com

ASK: About Special Kids, Inc. www.aboutspecialkids.org 317-232-7770

Indiana Governor’s Council for People with Disabilities (GPCPD)

800-609-8448

Autism Society of Indiana

877-241-8144

Blind and Visually Impaired Services (BVIS)

812-855-6508

Indiana Resource Center for Autism

800-545-7763

Bureau of Developmental Disabilities Services (BDDS)

317-233-1325

Indiana State Department of Health

844-446-7452 800-545-7763

Bureau of Rehabilitation Services (BRS)

Indiana Statewide Independent Living Council (INSILC)

855-641-8382

Indiana Works

800-332-4433

INSOURCE http://insource.org/

Deaf and Hard of Hearing Services (DHHS) DHHSHelp@fssa/in.gov 800-622-4968

Disability Determination Bureau

888-673-0002

Division of Aging (IDA)

800-457-4584

Medicaid Disability

800-403-0864

Division of Family Resources (DFR)

317-232-7770

Medicaid Waivers

317-232-7800

Division of Mental Health and Addiction

800-772-1213

Social Security Administration (SSA)

317-925-7617

Down Syndrome Indiana

877-511-1144

Early Childhood and Out of School Learning (OECOSL)

317-466-1000

Easterseals Crossroads

911

Emergency

844-323-4636

Family Voices Indiana www.fvindiana.org

800-545-7763

First Steps

574-234-7101

IN*SOURCE www.insource.org

317-232-0570

Indiana Department of Education: Office of Special Education www.doe.in.gov/specialed

317-233-4454

Indiana Family and Social Services Administration (FSSA) www.in.gov/fssa/index.htm

1-800-772-1213

Social Security Disability Insurance (SSDI)

877-851-4106

Special Education Questions

317-871-4032

United Cerebral Palsy Association of Grater Indiana

800-545-7763

Vocational Rehabilitation Services (VR)

DISCLAIMER: Any articles included in this publication and/or opinions expressed therein do not necessarily reflect the views of The N2 Company d/b/a N2 Publishing but remain solely those of the author(s). The paid advertisements contained within the Special Needs Living magazine are not endorsed or recommended by The N2 Company or the publisher. Therefore, neither The N2 Company nor the publisher may be held liable or responsible for business practices of these companies. NOTE: When community events take place, photographers may be present to take photos for that event and they may be used in this publication.

March 2021 • Special Needs Living

Sponsor I N D E X Neighborhood

Thank you to all the below businesses who have chosen to support Special Needs Living magazine each month!! They would be delighted to help you with your next project or need. If you know of a business who helps those with Special Needs and would be a good resource to families please email us to let us know. Jamie.McCabe@n2pub.com

ABA & COMPREHENSIVE SERVICES K1ds Count Therapy (317) 520-4748 ABA SERVICES Autism Center for Enrichment (317) 436-7080 Mindful and Modern ABA Therapies (317) 827-7777 The Indiana Institute for Behavior Analysis, LLC (317) 388-8131 ABA/COMPREHENSIVE SERVICES The Hope Source (317) 578-0410 ACCESSIBILITY PRODUCTS AMRamp (260) 519-1935 ASSISTANCE DOG Indiana Canine Assistant Network, INC. (ICAN) (317) 250-6450 ATTORNEY-WILLS/TRUSTS/ ESTATE PLANNING Law Office of Elizabeth A. Homes LLC (317) 660-5004 CASE MANAGEMENT IPMG - Indiana Professional Management Group (866) 672-4764 DENTAL CARE Children’s Dental Center (317) 842-8453

4 Special Needs Living • March 2021

FINANCIAL Munder Financial James Munder (317) 238-6621 WestPoint Financial Group Gordon Homes (317) 567-2005 FUNCTIONAL MEDICINE Wholestic Nutrition (317) 429-0111

MORTGAGE CrossCountry Mortgage (317) 666-4679 NEUROFEEDBACK THERAPY Indy Neurofeedback (317) 888-8500 PEDIATRIC THERAPY Wee Speak (765) 446-8300

GYMNASTICS Body by GymRoots Studio (317) 579-9300

REAL ESTATE Encore Sotheby’s Patti & Jeff Carroll (317) 809-5839

HEALTH & WELLNESS LifeVantage - Team Richards Kristin Richards (317) 698-5264

REGENERATIVE MEDICINE/ STEM CELL THERAPY Destination ReGen (317) 522-1980

Ritello Clifton Herbert (661) 317-6157

SCHOOL Dynamic Minds Academy (317) 578-0410

INSURANCE: AUTO/HOME/LIFE State Farm Josh Fields (317) 875-0013

SCHOOL - SPECIAL EDUCATION The Fortune Academy (317) 377-0544

INVESTMENT MANAGEMENT Dan Claxton Investment Advisory & Broker Dan Claxton (317) 250-8080 MOBILITY / ACCESSIBILITY CYA Mobility (317) 530-2541

SPECIAL EDUCATION CONSULTING IEP Services, LLC. Sheila Wolfe (317) 573-9610 SUPPORT SERVICES Easterseals Crossroads (317) 466-1000

PUBLISHER’SNOTE

Each and every month that we bring this magazine to you it is getting better and better. Each month I look forward to reading each and every story. Each one hits home and inspires and impacts me. Thank you for your willingness to share your story. We are honored to provide this platform to bring the Special Needs Community together. This last month has been a very interesting one for my son. Jordan will be 9 in June and he is autistic, non-verbal with epilepsy. He is always happy and full of joy. He is very sensory seeking and often times will seek sensory input through squeezing things in his hands. Over the last few years, we have tried many types of squish. We have made homemade slime, used the kinetic sand, silly bands, and one of our favorites called Morph because it does not stick to clothes, furniture or carpet. Years ago it was pulling the carpet, plastic bags, trash bags, and tissues, even those in trash cans. Last year he was into his diapers and pulling them to get pieces to play with. We then went to cloth diapers for about six months to give him time to forget he could pull his diaper and then we were able to transition back to normal diapers where he no longer pulled them. This last month he is back at it again and often times will get into his own poop and smear it on himself and things around him. This is not always a fun thing to clean up. I have been trying so many things to keep him out of it and wanted to share some things in case others were going through similar things and could find this helpful. Or if you have had this experience before and found things that worked, please let us know. This month when he did get into his poop, I got him cleaned up in the bath. I went down to clean everything up and when I came back up he was in the tub with his favorite blanket. I couldn’t help but smile as he was so happy to just relax in the bath with his blanket. See photos 1. Put on the diaper with boxers over 2. Put on onesie long johns 3. Put on custom made backward zip-up pajamas I am so thankful to be able to bring this magazine to you each and every month, where we are able to share these personal stories, challenges, inspiring moments/milestones and ways we have overcome some of these challenges.

Meal prepping for Jordan’s daily smoothies

How to keep Jordan from getting into his poop, pulling his diaper and getting undressed. Step 1 – Put on a diaper with boxers over

Step 2 – Put on a onesie long johns

be written by our readers. It is for you, by you, and meant to connect you.

Jordan enjoying a bath with his favorite blanket

If you have a story you would Step 3 – Put on customlike to share in made backward a future issue, zip-up pajamas you are welcome to email us at SpecialNeedsLivingIndy@ n2pub.com or check out our Linktr.ee/Community.Stories to view some of the story template options.

Jordan and I at Bouncy Land

Huge thank you to all the supporters helping to make Special Needs Living possible monthly. If you would like to be involved in any way, or for more information on how you can support or sponsor, please email me Jamie.McCabe@n2pub.com. You can follow us on our Facebook page, Special Needs Living magazine to view our monthly digital versions and to keep up with events, stories, and things we are looking to add to the magazine. We hope you enjoy the February issue of Special Needs Living. We welcome feedback and are excited to bring this magazine and resource to you each and every month! Your Publisher,

Special Needs Living is designed for individuals with special needs and families who have a child with any type of special need, whether psychological, behavioral, emotional, or physical. Stories will largely

Jamie McCabe 248-882-8448 Jamie.McCabe@n2pub.com March 2021 • Special Needs Living

MEET THE Special Needs Living

TEAM

JAMIE MCCABE Publisher & Area Director

BRITTANY LOWE Event Executive

HEATHER GREGG Photographer 21 Vines Photography

LEAH PARKS Knightingale + Willow Photography

MARIA SMIETANA Editor & Writer

WRITER & CONTRIBUTORS

CARLA MILLER

DEANDRA YATES

ERIN BOAZ

MATT KNIGHT

AARON OLSON

PAUL HATHCOAT

ANGELA ARLINGTON

SHANNAN PENAFLOR

REBECCA WOOD

SHEILA WOLFE

LAURA SPIEGEL

MAUREEN MARSH

ZACH ELLIOTT

6 Special Needs Living • March 2021

HAVE A STORY TO SHARE

ACCOMPLISHMENTS/ACHIEVEMENTS/MILESTONES LOOKING TO CELEBRATE ALL SPECIAL NEEDS INDIVIDUALS

Some accomplishments and milestones take years ... We want to recognize you/them! Are you or your child celebrating a birthday, milestone, achievement or accomplishment? We want to recognize you – email us at SpecialNeedsLivingIndy@n2pub.com.

Would you like to share a story in an upcoming issue of Special Needs Living? We want to hear from you – To share a story or to nominate someone else to be in an upcoming issue of Special Needs Living, email us your story ideas or nominations to SpecialNeedsLivingIndy@n2pub.com. To view several story options with quick links to answer questions and upload photos go to Linktr.ee/Community.Stories.

CALLING ALL 501C3 ORGANIZATIONS THAT SUPPORT THE SPECIAL NEEDS COMMUNITY

Each month we will highlight a nonprofit for free to let the community know more about how they support and impact families and individuals with special needs. Do you run a non-profit or know of one that supports the special needs community? Email us at SPECIALNEEDSLIVINGINDY@N2PUB.COM.

REFERRAL PROGRAM

We have a referral program $100 bonus to anyone who personally connects us with a business or organization that chooses to support Special Needs Living. Please let us know if there is a company or organization that supports the Special Needs Community that you would like to recommend – Jamie.McCabe@n2pub.com.

promotions

THIS MAGAZINE IS FOR YOU - BY YOU

TO SUPPORT & CONNECT YOU HERE IS HOW YOU CAN BE INVOLVED HIGHLIGHTING ALL SPECIAL NEEDS BUSINESSES FOR ADVERTISING:

Do you run a business that supports the Special Needs Community and are looking to advertise and support the Special Needs Living magazine email: Jamie.McCabe@n2pub.com.

Do you have Special Needs and run a Business? We will highlight all those with special needs who run a business for Free – email us or go to Linktr.ee/Community.Stories and click on (Special Needs Living – Business Profile Q&A).

LET’S GET SOCIAL TO KEEP UP TO DATE WITH ALL THINGS HAPPENING WITH SPECIAL NEEDS LIVING UPCOMING EVENTS/SOCIALS/GATHERINGS STORIES & HIGHLIGHTS WAYS TO BE INVOLVED

March 2021 • Special Needs Living

GLOBE STAR, LLC

and Gentle Teaching hand-in-hand, heart-to-heart By Mara Hawks photos by Amber Crisp

The Indiana agency Globe Star was established in 1996 as a provider of direct services for individuals with intellectual and developmental disabilities. Areas of service include the cities of Chesterton, Warsaw, South Bend, and Indianapolis, with services reaching families in surrounding counties and rural locations. Dr. Anthony (Tony) M. McCrovitz is Executive Director of Globe Star, LLC, and also of Quality-of-Life Institute, Inc., a nonprofit organization that supports the mission of Globe Star. The primary purpose of the Institute is to add value to caregivers’ quality of life with the support that lets them know they are appreciated by the Globe Star community. Support for caregivers’ quality of life ranges from practical (e.g., a car repair or voucher for personal care) to educational opportunities and the funding of certifications. Ongoing training is something the Institute also provides through workshops, mentoring support, and the support of one another in an organizational culture that learns through shared reflection and dialogue. Balancing the day-to-day demands of caregiving is challenging. As an agency, Globe Star strives to demonstrably support its staff in their dedication to the individuals they are serving, and in their commitment to continuing education for their professional development and competence in providing quality of life services.

8 Special Needs Living • March 2021

The media, materials, workshops, tools, and resources that are written, developed, and produced by Quality of Life Institute for Globe Star’s staff, are also offered to direct service providers, agencies, and other organizations worldwide. The philosophy, practice, and promise of Gentle Teaching is the heart of Globe Star’s Quality of Life Model™ of services, finely woven into their motto, “mentoring a spirit of gentleness.” Rooted in principles of interdependence, the practice of Gentle Teaching creates companionship and a sense of community with others, cultivating a sense of belonging and a genuine feeling of being valued. The four pillars or main lessons of Gentle Teaching are: to feel safe; to feel loved; to feel and be loving; to feel and become engaged. For individuals receiving quality of life services at Globe Star, a sense of belonging is nurtured and one’s intrinsic motivation for learning is cultivated through mentoring a spirit of gentleness. “Social-emotional learning can only occur when one feels safe and accepted without conditions,” says Dr. McCrovitz. “This is the cultural nature of human development that is shaped by our interactions with one another and by how we are able to experience a sense of belonging. A sense of belonging is the root of interdependency that shifts self-perception from isolation to inclusion.” In talking about the social vision of Gentle Teaching, McCrovitz further explains, “We can envision and engage in the unfolding of gifts and potentials only in proportion to the accessible means and opportunities provided us for exploring and

cultivating the roots of connection to self, to others, and to the world within and around us.”

one’s self and a sense of responsibility for one’s own life, with the invitation to grow and move beyond limitations.

At Globe Star, the “mentoring a spirit of gentleness” dynamic between the individual and their caregiver is paramount to the delivery of direct services. A framework of Gentle Teaching guides the formation of this relationship-building platform that engages one in self-awareness and in processes of learning companionship (other-awareness) and having a sense of community.

“They first see our presence,” a founder of Gentle Teaching, John McGee, would say. “Here are my words, and they connect with our eyes; here is my hand.”

The mentoring environment unconditionally affirms one’s existence and sense of belonging, supporting one’s interactions with increased value and meaning for social well-being and quality of life. The integration of value and meaning into one’s life cultivates quality of life.

Gentle Teaching at Globe Star is the heart of their Quality of Life Model™ of services, mentoring a spirit of gentleness and guiding others in personal growth and in exploring and discovering value and meaning that enriches one’s quality of life (with help or necessary supports).

Mentoring a spirit of gentleness nurtures the unknowable capacity of individuals and their potential for making connections that support social-emotional learning processes. Through the lens of Gentle Teaching, self-reflection and self-assessment exercises are essential to the caregiver’s mentoring role and for the planning of how they will teach the four main lessons. “How will connections be made? How can I understand this person and learn of their gifts and vulnerabilities? What am I communicating through my interactions, and how am I using my tools? How am I valuing and protecting this person? How will I create meaningful moments, develop dialogue, and invite engagement? How can I plan to stay the course that involves goals and reaching different destinations, while navigating the ebbing and flowing waters of social-emotional experiencing and processing, shifting one’s internal environment that surfaces as calm or turbulence?”

Our tools for relationship building with Gentle Teaching are our hands, eyes, words, and presence. It’s important to have an understanding of what is being communicated and conveyed through the use of these tools as we are communicating and incorporating both verbal and non-verbal dialogue, inviting, mentoring, teaching, and engaging the individual in a safe and loving learning environment.

With a framework of Gentle Teaching, mentoring a spirit of gentleness values and protects the relationship dynamic that anchors one’s social-emotional environment to unconditional acceptance (“safe and loved”). This foundation invites one’s awareness, engagement, and growth in contentment and interdependence while celebrating togetherness, companionship, and a sense of community. For More Information: http://globe-star.org/ http://qualityoflifeinstitute.org/ Globe Star, LLC 621 Broadway, Chesterton, IN 46304 219.921.5492 (main office)

Mentoring aspects engage one in the dialogue and discovery of companionship and community, finding the way, together, for the emergence of one’s unique and resonant voice (verbal and non-verbal) and their unfolding, authentic narrative. Mentoring a spirit of gentleness is a path of learning for social-emotional awareness and growth. It creates a deeper connection with

Would like to nominate an organization that has had an impact on your family to be in an upcoming issue of Special Needs Living? Email us at SpecialNeedsLivingIndy@n2pub.com.

March 2021 • Special Needs Living

i don’t have any or few assets By Gordon Homes, CFP

WHY DO I NEED A SPECIAL NEEDS TRUST? Many people think they don’t have enough assets to go through the trouble and expense to set up a special needs trust.

Not only will this cost David $8,000 (in this example), but that $8,000 must largely be spent down on items that the government would have paid for.

People who say they are too poor to have a special needs trust are exactly the ones who need it the most!

In addition, the house could possibly be lost as well, as it may be considered a “countable asset” deemed available to David. This could be a result of David owning the house and then perhaps having to move into a care facility or other living arrangement.

Here’s an example: Mr. and Mrs. Jones have a small house that is paid for and about $20,000 in assets. They have a child with special needs, David, who receives government benefit assistance by way of Medicaid and Supplemental Security Income (SSI). If one parent should die without a will their assets that would normally pass by a will (most likely to the spouse) will be divided between the spouse and David. This is by operation of law. In this instance, David may receive $10,000 in his own name. This will disqualify him for Medicaid and SSI until that $10,000 is spent down to the maximum amount allowed in assets to qualify for Medicaid and SSI, which in most states is $2,000.

10 Special Needs Living • March 2021

If the $10,000 were put in a special needs trust, David would not only continue qualifying to receive Medicaid and SSI but would also have that $10,000 available to supplement those services and the house may be more secure. You do not need to be rich to build a safety net for your loved one. This cost of NOT planning may be much higher than the cost of planning. Due to the complexity of federal and state laws, you may require specially trained professionals to help you plan for the future of your dependent with special needs.

SpecialCare is a program created by MassMutual that provides access to information, specialists and financial solutions to people with disabilities and their families. For more information about Massachusetts Mutual Life Insurance Company (MassMutual) and its SpecialCare program, please visit www.massmutual.com/specialcare. The Special Care Planner title is used by MassMutual financial professionals who have received advanced training and information in estate and tax planning concepts, special needs trusts, government programs, and the emotional dynamics of working with people with disabilities and other special needs and their families. Gordon can be reached at (800) 903-6380, ghomes@financialguide.com, or www.gordonfhomes.com. Provided by Gordon F. Homes, Jr. courtesy of Massachusetts Mutual Life Insurance Company (MassMutual). Securities, investment advisory services and financial planning are offered through qualified registered representatives of MML Investors Services, LLC, Member SIPC www.SIPC.org, OSJ 900 East 96th Str., Suite 300, Indianapolis, IN 46240, (317) 469-9999. The information provided is not written or intended as specific tax or legal advice. MassMutual, its employees and representatives are not authorized to give tax or legal advice. Individuals are encouraged to seek advice from their own tax or legal counsel. Individuals involved in the estate planning process should work with an estate planning team, including their own personal legal or tax counsel. © 2021 Massachusetts Mutual Life Insurance Company (MassMutual), Springfield, MA 01111-0001. All rights reserved. www. massmutual.com. SC1020 219 CRN202202-208512

local events

Events provided by : Brittany Lowe Event Executive

Important Note: Prior to attending any events, please be

Note: Don’t forget to apply for the Access Pass! The Access Pass

mindful of any COVID-19 restrictions. Please review the state mask covering executive order. There are exemptions within the order that include that children under 2 years of age should not wear a face-covering due to risk of suffocation and any person with a medical condition, mental health condition or disability, which prevents wearing a face covering. Since COVID-19 is still among us, there is a possibility that the events listed and places to go could be canceled, rescheduled, or closed. Please confirm event status and below listed details before going from contact info provided below in case-specific event details have changed since posting.

Program allows for families that meet the specific requirements listed below to visit the Children’s Museum and all participating locations for $2 per family member per visit, for up to two adults and all dependent youths living in the household. Qualifications include the following: - Hoosier Healthwise Insurance (Indiana’s health care program for low-income families, pregnant women, and children) - SNAP (Supplemental Nutrition Assistance Program) - TANF (Temporary Assistance for Needy Families) Apply Here:

https://www.childrensmuseum.org/visit/hours/access-pass

Denver Nuggets vs. Indiana March 4, 2021 Time: 7:00 pm Bankers Life Fieldhouse 125 S. Pennsylvania St. Indianapolis, IN 46204 Contact: 317-917-2500 https://www.nba.com/pacers/

Fritz Lang’s Metropolis Clowes Memorial Hall of Butler March 20, 2021 7:30 pm 4602 Sunset Ave. Indianapolis, IN 46208 Contact: 317-940-6444 https://www.icomusic.org/

Sensory Friendly Hours First Sunday of Every Month 10–12 pm Conner Prairie 13400 Allisonville Rd. Fishers, IN 46038 https://www.connerprairie.org/explore/ things-to-do/sensory-friendly-hours/

NCAA Division I Men’s Basketball Championship and Final Four March 14–April 5, 2021 Lucas Oil Stadium 500 S. Capitol Ave. Indianapolis, IN 46225 317-262-8600 https://www.lucasoilstadium.com/

Breakfast with Bunnysaurus Rex March 27 and 28, 2021 8 am–9:30 am Children’s Museum Indianapolis 3000 North Meridian St. Indianapolis, IN 46208 317-334-4000 https://www.childrensmuseum.org/visit/calendar/ view/667/2021-03-27

Is there a local event for the Special Needs community you would like us to promote in an upcoming issue? Email us at SpecialNeedsIndy@n2pub.com.

GYMNASTICS FOR ALL!

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NEW classes for Beginning Gymnastics students on Tuesdays at 5pm via ZOOM

$50 per month

Email to register and receive payment link.

11952 Fishers Crossing Dr, Fishers, IN | (317) 579-9300 | www.gymrootsinc.com March 2021 • Special Needs Living 11

12 Special Needs Living • March 2021

impact supporters

THANK YOU to the below Impact Supporters for helping to support Special Needs Living Magazine

Heather Gregg – 21 Vines Photography – 317-345-7687

Portrait Photographer – I love to photograph families and children. I’m available for seniors, engagements, maternity, newborn lifestyle, cake smash, headshots, extended family sessions and more!

Matt Hadley – AP Engineering & Consulting, Inc. – (317) 828-0250

This monthly magazine is free on behalf of the supporters. The Impact Supporters help us to get the printed copy out to more families. If you would like to help support Special Needs Living Magazine, please reach out to SpecialNeedsLivingIndy@n2pub.com.

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RitelloIndy March 2021 • Special Needs Living

non-profit spotlight By Brittany Lowe

About It is no secret that the number of autistic individuals is increasing every day. When parents/guardians are told their child is autistic, parents/guardians usually experience a period of figuring out the next step. This statement makes it sound as if once you figure out the next step, it’s done. It is not over. The parents/guardians will continue to fight and advocate for their child/adult for possibly the rest of their lives. Figuring out what’s best on this path can be difficult but is not impossible. With the use of numerous resources available to parents/guardians, finding something that helps with the child’s needs is possible. Autistic individuals are brilliant and have strengths that can go unnoticed. These strengths can be discovered through interests. Let’s show the world the strengths of autistic individuals. Autistic Abilities Organization, Inc. is a non-profit organization based in Indianapolis, IN. We are dedicated to being an organization where 60% of the board of directors are autistic adults and 40% are parents/guardians of autistic children/adults. The mission is to focus on the autistic individuals and their family’s emotional needs while assisting in discovering their abilities and showcasing them to the community. Overall striving for awareness and acceptance of their gifts and strengths. Programs The Family Mentorship and Support Program provides support for autistic individuals and their families. Support will be provided by one autistic individual and one parent/guardian. This will allow for ongoing guidance and support through the autism journey. The autistic individual will mentor other autistic children/individuals within the community. The parent/guardian will work with other parents/guardians. Even though they both might focus on different things, they still will work together as a team to support the family overall. Workshop Series led by autistic individuals and parents/guardians will support families through workshop sessions on different topics pertaining to what it means to be autistic, goal/intervention

14 Special Needs Living • March 2021

planning, presentation about different available services, and more. These workshops will pair with a provided workbook. Business/Talent Marketplace will highlight the businesses and talents of autistic individuals and parents/guardians. Information and links to their businesses will be included on the directory. Research is something that is conducted daily. Having access to reliable resources such as peer-reviewed articles and literature reviews is one of the many things needed when making decisions. Having direct access to and understanding some of the information can be tricky but is possible. With this program, we hope to provide direct access to peer-reviewed articles and other research material to parents/guardians and autistic adults.

About the Founder My name is Brittany Lowe and I am a daughter, mother, sister, and wife. I am the proud mother of an autistic son. As a parent to an autistic child, I have experienced the initial emotions and confusion that presents itself when receiving the diagnosis. I, like many parents, am on a lifelong quest for knowledge and strive to be the best advocate for my child. Since his diagnosis, I have been stepping outside of my comfort zone. The drive I had to serve and help others that was always with me, transformed into something that pushed me even further. Nervous, yes, but I simply could not get these thoughts out of my head. I had to act. I had to push myself. What pushed me was my son and the support from my husband. Through this, the idea of the non-profit was born. Before starting Autism Parents’ Support Group of Indiana, the idea of starting a non-profit never crossed my mind. The fear of the unknown, as the non-profit world was not familiar to me, was strong. I want to leave a message with parents/guardians, autistic individuals, really anyone – don’t back down because it’s outside of your comfort zone. Push through the fear, your purpose is waiting for you! Much love to all! Interested? If you are interested in more information about the programs above, email us! We also need volunteers! You do not have to be

autistic or a parent/ guardian of an autistic individual to volunteer. Autistic individuals, their families, and anyone interested in being a part of this organization are welcome! For more information about the Autistic Abilities Organization or how to get involved, send an email to autisticabilities@gmail.com. We are also on Facebook!

Do you run a non-profit? Would you like to be a part of the non-profit spotlight or nominate someone else to be in an upcoming issue of Special Needs Living? Email us at SpecialNeedsLivingIndy@n2pub.com

Indy Neurofeedback is Changing Lives! Do you or someone you love suffer from ADHD, Anxiety or Autism? Let Us Help You Explore Your Options.

Neurofeedback is a non-drug, non-invasive solution to symptoms related to brainwave dysregulation. It's natural and offers a fix to the problem, not just a bandage that masks the symptoms. "We followed the same path most of the other autism parents do with GFCF, DAN Dr., supplements, HBOT. What really made a difference in our son’s attention span, executive processing skills, and anger management was neurofeedback through INDY Neurofeedback and Leanne O’Neil." ~Maria S. (parent)

Schedule a consultation today! 8801 N. Meridian, Suite 306, Indianapolis, IN 46260 (317) 888-8500 • www.indyneurofeedback.com March 2021 • Special Needs Living

meet travis breeding By Travis Breeding

Sharing What it is Like to Live with

autism

Hi, my name is Travis Breeding. I am 35 years old. I was diagnosed with autism when I was 22. I am the author of over 15 books about life on the autism spectrum. The books include discussions on common comorbid mental health conditions that coexist along with autism. I reside in Huntington, IN. I live with my parents and three dogs – Miley, Bella, and Scooter. I love to hang out with my dogs and take them on walks. I enjoy playing basketball with friends. I played basketball in elementary school and was one of the stars on the team. I have had many challenges with being on the autism spectrum. Keeping employment has been the hardest part of autism for me. Traditional jobs just do not work for me.

16 Special Needs Living • March 2021

Instead, I am trying to make it through life and support myself as an entrepreneur. I love to write books about autism. I recently started my own publishing company – TEB Publishing – to help other people publish their books. My goal is to help parents of children with autism tell their stories in a book so that they can share their stories with the world like I do. I also hope to help publish books for autistic teens and adults who want to tell their stories. I personally believe everyone should be able to write and publish their story in a book. Life was easy in elementary school. Things really began to become a challenge for me when I got into middle school and I started having to change classes.

Changing classes was extremely confusing and overwhelming for me. I did not like all the noise in the hallway with people talking and gossiping. In elementary school, kids played on the playground. But in middle school kids stopped playing games on the playground and started talking and gossiping.

Dating and relationships are challenging with autism just like employment is. Anything that involves a big level of social energy is a challenge for me because it causes so much anxiety. But I overcome a lot of anxiety to put myself out there and get to know people.

Social rules changed in middle school like I had never experienced before.

After high school, I spent a few years in and out of college before I finally received a diagnosis of Asperger Syndrome at the age of 22. Now I spend time writing books about autism spectrum disorder and raising awareness of what it means to be on the autism spectrum.

Thankfully, I had my trombone. I joined band in sixth grade. My trombone became a special interest. Many people with autism have a special interest in something and in middle school and high school, my special interest was the trombone.

Today, life is good. I am a happy person. I wish I could earn more money to be able to get my own place and live independently and that is one of the reasons I am so excited to share my story and books with you.

In middle school, my band teacher was my favorite teacher and band was my favorite class. I could not stand my other classes and had trouble focusing on homework, but I was always able to focus on playing the trombone.

If you would like to get to know me, please find me on Facebook. You may also visit my website at http://www.tbreedauthor.com to learn more about me and my books.

I often escaped into imagination and pretended I was in the philharmonic as a principal trombone player. I wanted nothing more than to have a career in music. That was before things became difficult in college and my dream was upended so that I could build a new dream of becoming a published author who helps people understand autism.

I would love to do public speaking and share what it is like to live with autism. If you are looking for someone to speak, please contact me and let me know. This was me in a nutshell. I hope you have a good day.

If you would like to share your personal or family story or to nominate someone else to be in an upcoming issue of Special Needs Living, email us at SpecialNeedsLivingIndy@n2pub.com.

In middle school, I was in concert band and jazz band. I loved jazz music. In high school, I was able to join the marching band and make a few friends that way. It was hard making friends and there were people that I thought were my friends who were not really my friends. The friendship/acquaintance ratio is a real thing. I make friends easily. I can meet someone and say hi to them and think they are my friend instantly. I have learned that neurotypical people take a much longer time when it comes to making friends and this is where the friendship/ acquaintance ratio comes into play. When I am around most people, I feel they are best friends. However, they think of me as an acquaintance. I won all kinds of awards in high school for playing trombone including the John Philip Sousa band award and the Louis Armstrong jazz award. In school, things were more of a friend to me than people. By the time I was in high school I was particularly interested in people. I was more interested in girls than boys and wanted a girlfriend, but I had no idea how to go about talking to girls.

March 2021 • Special Needs Living

THE ABC’S OF IEP’S Last month we examined the need to establish current and accurate Present Levels of Performance By Sheila Wolfe (PLOP) for each student with a disability, and then IEP Services write an appropriate IEP to address the needs of that student. Creating an appropriate IEP, which delivers meaningful progress, is a topic we will discuss over the next few months. This month let us look at creating academic goals.

Each student, regardless of disability or level of functioning, has the right to pursue meaningful academic progress. Within this arena are four broad categories of content: reading fluency, reading comprehension, math, and written expression. Each of these specific areas should have been tested during a full educational evaluation. The evaluation results should provide the school and parent with information that can be used to set appropriate goals. If the assessment(s) does not provide information regarding the grade-level equivalent of the academic scores for the student, ask the school or evaluator to provide this information. Simply knowing that your child tested “below average” for math computation, for example, does not provide the information necessary to set appropriate goals.

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18 Special Needs Living • March 2021

In addition to understanding the grade-level equivalent or agelevel equivalent of your student in each academic area, parents and schools need to understand the specific skills mastered and not mastered by that student. This information can often be found in the “baseline assessments” done toward the beginning of each school year. Some common names of these assessments include NWEA, Acuity, DIBELS, Aimsweb, STAR, etc. Educators can perform an error analysis on these assessments to find the specific skills the student has not mastered in the various academic areas. Supported by detailed information regarding the PLOP of the student in the four basic academic areas, appropriate goals can be written in two basic ways: 1) to address the skills that have not been mastered or 2) to achieve a certain amount of growth. Deciding which approach is best (or what combination of the two) often depends on the individual ability of the student. For example, a third-grade student who has the reading fluency scores of a 2.5grade level student might have a goal to achieve reading fluency scores equivalent to his typical peers by the end of the school year. The overall goal in this case is closing the gap with peers. Conversely, a fifth-grade student who has reading comprehension skills at the 2.5-grade level might have a goal to achieve a year’s growth (get to a 3.5 grade level) for a year’s instruction. I encourage parents to make “a year’s growth for a year’s instruction” to be the lowest acceptable goal in any academic area unless it is agreed that the student is just not capable of this level of growth despite a rigorous and appropriate academic program. Grade level academic standards for Indiana can be found at https://www.doe.in.gov/standards. Parents should make themselves aware of the skills and content included in each grade level academic area as their child progresses through school. Not only will this help you understand the necessary skill progression to become proficient in each academic area, but it also helps to make sure the IEP does not “skip” any skills as your child moves through the grades. This is particularly important in math since those skills build directly upon one another. When setting goals for written expression, be aware that there are fine motor (handwriting/keyboarding), visual-motor-integration (copying from a model or board), and organizational skills (staying on topic/remembering the mechanics) needed to perform in this area. Written expression also requires solid reading/phonics fundamentals to be successful. Ask your school to provide a grade-level writing rubric at the level your student will be working. This should show the various skills being assessed at that grade level (punctuation, spelling, sentence structure, content development etc.). This is only a broad overview of goal development for academic skills. Next issue, we will expand our look at goals to include additional developmental concerns such as behavior, social skills, language, fine motor, and gross motor skills. Please remember, the goals in every IEP are directly related to that student’s needs. If there is an established need, there should be a Sheila A. Wolfe | IEP Services, LLC corresponding goal to address it. sheilawolfe@sbcglobal.net

Let me introduce you to the Strauss Siblings. Claire is a 17-year-old senior at Fishers High School. She is graduating this spring, while her sister, Megan, graduated in 2020. Megan is 19 years old and is a freshman at Anderson University. They also have a brother, Ian, who is 13 years old and in eighth grade at Fishers Junior High. Claire is excited to have the opportunity to share her perspective on what it’s like to have a sibling with special needs. The first thing she points out is that she has never looked at Megan as having autism. She just sees her as her sister. What fascinates Claire about Megan is observing how the autistic brain works. As a result, it has inspired her to teach others about it. When asking Claire to reflect on a funny story, she recalls a time when she and Megan had a road trip to a veterinary camp at Purdue. On their way, there was some construction with a sign that said, “Road Work Ahead.” They both instantly quoted a Vine that they had both seen that was related to that sign as they simultaneously said, “Uh, yeah, I sure hope it does!” Both Claire and Megan are huge movie buffs and love quoting movies. Some of Claire’s favorite memories with Megan are when they would reenact scenes from movies when they were younger. For their evening routine, they would often act out scenes before they went to bed. As they have gotten older, they often spend time in the car together as Claire drives Megan to different places. They talk about random things, such as something they saw on the internet, or recall a funny moment that recently occurred. They have a special bond as sisters when they can have fun with the things they have in common.

siblings perspective

By: Erin Baoz

Meet Megan Claire

Strauss

One of the things Claire really admires about Megan is how she is able to vividly remember things. She recalls that ever since Megan was little, she was always known as the family’s “walking encyclopedia.” Claire would always go to her with questions that had to do with animals or history. Growing up with Megan over the last 16 years has taught her a lot about how we all communicate in different ways. Advice that Claire would share with others is to be patient. Autistic individuals may not express their thoughts and feelings the same way a typical person does. With patience and listening, she shares “you will slowly learn how to better communicate with them.” Some of the challenges that Megan faces is having a harder time processing things and not knowing how to react in certain situations. Sometimes Claire wonders if it is due to her sensitivity to excess stimulation and the brain not being able to process it. One way Claire tries to help overcome that challenge is by not adding any stress to a situation that may already pose itself as stressful. “Having a sister with special needs can be challenging, but it is equally as much fun,” Claire said. “I wouldn’t change it for the world.”

Do you have a sibling with special needs and would like to share your story & perspective in an upcoming issue of Special Needs Living? Email us at SpecialNeedsLivingIndy@n2pub.com.

March 2021 • Special Needs Living

a moment of inspiration By Laura Spiegel – Paint Her in Color

NO PRESSURE,

but We’ll Remember This Moment Forever: 10 Tips for Delivering

Difficult Pediatric Diagnoses On August 12, 2013, my 5-week-old daughter was diagnosed with cystic fibrosis. I distinctly recall the feeling of “Everything has changed.” I had worked in the field of chronic disease for almost a decade. And yet, it had never occurred to me that this would happen. Other people’s kids might be sick, but not mine. Not my baby. I remember our first day in the cystic fibrosis clinic like it was yesterday. I cried in the parking garage and struggled to nurse my daughter in the waiting room. And then it happened. That moment is forever etched in my mind. The pediatric pulmonologist took my hands, looked me in the eye, and said, “Your daughter is going to live a long and full life.” She went on to say that it was her job as a physician and my role as a parent to help enable this. In that moment, she recognized me as a mother and earned my trust. She forged the beginning of a partnership that would continue for years to come. And to this day, her words remain imprinted on my heart. I’ve spoken with hundreds of families like mine, and nearly all remember the exact moment their lives separated into “before” and “after.” That is why it is so important for physicians, nurses, and other care team members to deliver pediatric diagnoses with intention. Words and actions matter big time.

20 Special Needs Living • March 2021

Here are 10 ways care teams can present difficult pediatric diagnoses with authenticity and compassion: 1. Be prepared. It sounds like a no-brainer, but take time to prepare for our conversation. How will you explain the diagnosis? What tone and body language will you use? What questions do you anticipate we will ask? How will you realistically instill hope? By preparing in this way, you can establish yourself as a credible source of information and begin to build a family’s trust. 2. Minimize information overload. Families need time to process life-changing news. When preparing for your first interaction with parents, consider what information you must convey and what can wait for another time. When parents are overwhelmed emotionally, it can be hard for us to digest everything you are telling us. 3. Acknowledge our emotions. Resist falling prey to the checklist. Look us in the eyes and ask how we are feeling. This guidance also holds for our interactions over time. It is difficult for a parent to clinically manage a child’s condition if we struggle with psychosocial barriers, such as depression, anxiety, or poor social support. Help us recognize these barriers and provide resources to help us overcome them. 4. Watch for nonverbal cues. I brought a highlighted copy of the Evidence-Based Guidelines for Caring for Infants with Cystic Fibrosis to my first care team appointment. I had a prioritized list of questions. At face value, I was an informed, activated caregiver who was ready to take my daughter’s condition by the horns. Still, my daughter’s physician recognized my blank expression and shaking hands. By pausing the

conversation and acknowledging how I was feeling, she validated my emotions as a mother and began to build my trust. Sit with us. My daughter’s pulmonologist did not stand over me; she sat across from me as an equal. At one point, she took my hands and spoke to me “mother to mother.” While physical touch is not appropriate for everyone, revisiting where you sit can help you form a sense of partnership with parents. Anticipate different responses. If more than one parent or caregiver is present, we may not respond in harmony. One may be analytical or matter of fact; the other more emotionally expressive or silent. Be sure to speak with both of us. Remind us that there is no one “right way” to respond to difficult news and that we are both important members of our child’s team. Address the elephant in the room. Parents might wonder, “Did I cause this to happen?” “Will my child go to school?” “Have a job?” “Have a family?” Proactively address these elephants in as authentic, yet as hopeful a manner as possible. Even if we aren’t asking these questions, we are thinking them. Offer words of hope where appropriate. Many parents will grieve the life we had envisioned for our child. Emphasize where we can find hope. Is science advancing? Are future therapies coming down the pipeline? To the extent that is realistic, help us set high expectations about our child’s capabilities vs. focusing on what our child won’t do.

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9. Point us to trusted sources. The day my daughter was diagnosed, a well-meaning person told me to Google her condition. Did you know that nurses used to kiss babies and declare those tasting of salt not long for this earth? I wish I had gone to the Cystic Fibrosis Foundation’s website instead. Like the CFF, most conditions have national foundations that provide credible, up-to-date information and support. These can be excellent first resources for parents. 10. Remind us that we’re not alone. Receiving a difficult diagnosis can be isolating. Let us know that you are our partner. Point us in the direction of local support groups or peer mentors who can relate to our day-to-day routines and be realistic sources of hope. For many of us, the emotional part of managing a special health care need is often as challenging as the clinical. If we know we aren’t alone, we are one step closer to being able to manage our child’s care. While a diagnosis discussion is just one encounter in a physician’s or nurse’s day, it is a moment that we parents will remember forever. Care teams don’t have to be perfect. They just need to treat us as real people with real emotions who are trying our best. In doing so, they can build trust and begin to form a partnership for optimizing clinical and emotional outcomes for years to come. Calling all individuals with special needs, parents, grandparents – If you would like to share some inspiration with the community or nominate someone else to be in an upcoming issue of Special Needs Living, email us at SpecialNeedsLivingIndy@n2pub.com.

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Meet the Roblero & Cabrera Family Aura Roblero, Marlon Cabrera, Ernesto, Marlon, Ivania

When Marlon Cabrera and Aura Roblero left their native Nicaragua 20 years ago, they settled in Indianapolis, where they already had family. Their son Ernesto was 2 at the time, and Marlon Jr. was born the year they emigrated. Ernesto graduated from college and works for IUPUI. Marlon is a sophomore there. Thirteen years ago, Aura and Marlon added a daughter, Ivania, to their family. “We did not know she had Down syndrome until

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Aura wants parents in similar situations to know that it’s okay to feel many different emotions at first. “Live your grief, but never lose hope,” she said. “Seek help and educate yourself about your child’s disability and support him or her in any way you can. LOVE them and teach them to be as independent as they can be. Don’t assume they can’t do something until they try. I assure you that you will be amazed at what they’re capable of if you them the opportunity to do so.” It’s no wonder that watching Ivania meet milestones has been a great source of happiness for her family. “I love to remember when she first walked at the age of 17 months, said her first word at the age of 3, and when she started dancing ballet at the age of 7,” Aura said, “She always loves to dance and I always encourage her to do it because I know that makes her happy.”

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after she was born,” Aura recalled. “We were very scared at first, but despite our fear, we made the decision to love her and help her in any way that we can.”

Ivania is now a seventh-grader at New Palestine Junior High School. Getting her included in the general classroom has been one of the greatest challenges that Aura has had to deal with. “I have always advocated for my daughter to have the opportunity to be educated in the least restrictive environment and to be able to participate in the same activities as her classmates,” Aura said. “I am very happy that she attends a regular classroom now.” At home, Aura makes sure that Ivania learns the skills that everyone needs for self-sufficiency. It’s notable that she’s already mastered many household chores that a lot of neurotypical 13-year-olds wouldn’t be expected to do. She’s in charge of making the grocery list and goes to the store with her mom to help locate items on the shelves. She cleans the table before and after meals and has learned to sort the laundry by color and fold the clothes after they come out of the dryer. That’s on top of updating the calendar every day, and being in charge of her school assignments.

For holidays, making cookies or cakes is a tradition in the Cabrera-Roblero household. “She’ll read the recipe while I do the baking,” Aura said. “At Christmas, we put up the tree and decorations. “We also carve pumpkins on Halloween.” Ivania is a pretty typical teen when it comes to what she likes. Aside from dance, her favorite hobby, she likes to ride bikes with her dad at the park, listen to music, especially hip-hop, and play basketball or kickball. Her favorite screen-time programs are Sam and Cat, Wiggles, Super Why, and America’s Funniest Home Videos. She’s a low-maintenance eater, preferring Subway, McCalister’s, Qdoba and Applebees. She’ll never turn down cookies and ice cream. And she can’t seem to get enough of trampolines, so she’ll go to Sky Zone to jump until she gets tired. Raising Ivania has given Aura a unique set of perspectives and experiences that are valuable for the families she serves as the bilingual health information specialist for Family Voices Indiana. “I love my job because it gives me the opportunity to know and help other families who have children with special needs,” Aura said. In turn, Family Voices, along with Insource, Down Syndrome Foundation, Hands in Autism and Indiana Resources Center have all helped the Cabrera-Roblero family navigate the world of special needs over the years.

else that you consider useful for your own situation,” she said. “Remember that each child is different and needs are varied, so it is important to focus on your child’s own needs.” Aura Roblero (317) 209 786 2417 Penny Ct. Indianapolis, IN 46229

Would like to share your personal or family story or to nominate someone else to be in an upcoming issue of Special Needs Living? Email us at SpecialNeedsLivingIndy@n2pub.com

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“I am always looking for resources and programs for teenage children where Ivania can have the opportunity to explore and learn new skills for her adult life,” Aura says emphatically. “My goal is to support my daughter in becoming the person SHE wants to be as an adult. Listening to her and supporting her in everything she wants to do to contribute to her adult life is what I enjoy the most.”

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For families with special needs children who have just moved into a new community, the first thing Aura advises is to look for organizations or foundations that are nearby and connect with them. “Learn about their resources, support groups and everything

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a moment of inspiration – by a special needs mom By Rebecca Wood

When You Feel Like You’re the

O N LY O N E W I T H A SPECIAL NEEDS CHILD I have a friend who battled infertility. In the midst of this challenging time, she visited her local Target. Minutes into her shopping trip, she gave me a call. “Hi, friend,” I chirped into the phone. “How are you?” In response, I only heard sobs. “What’s wrong?” I asked in a voice drenched with concern. She sniffled, “When I got to the store, everywhere I looked were pregnant women. Like every single aisle.” I spent the next hour comforting my friend. I hated that the excursion caused her so much distress. However, I was pretty sure that the Target store wasn’t crawling with pregnant women. I believed that my friend’s focus lasered in on expectant moms. And with that narrowed vision, she gazed at a store filled only with fertile women. Over the years, I noticed that my friend isn’t the only person who struggles with tunnel vision. At the tender age of 6, my son was diagnosed with Asperger Syndrome. We weren’t surprised by the diagnosis as our son displayed many of the classic symptoms of a high-functioning child on the autism spectrum: he struggled with social connections, intently focused

on his interests and objects, and clung to a rigid sense of routine and structure.

sheepishly announced as if she were testing the waters to gauge what was a safe conversation.

While we weren’t caught off guard, we still wrestled with our acceptance of the situation: we were parents of a child who looked and acted differently from his peers.

I swiveled in her direction and with tears in my eyes exclaimed, “My son has the same diagnosis.”

Like my friend who only saw pregnant women, I began to only observe “normal” looking children. At the stores, all the children displayed good behavior. In the parks, every kid appeared socially savvy and emotionally appropriate. In conversations with my friends, their sons and daughters seemed to be thriving in sports, school, and home life. I walked away from all of these situations in tears thinking I was the only one in the world with a child who functioned differently. I felt totally alone in my struggles and wallowed in sorrow and pity. One day, I connected with an acquaintance at the park. We started with chit-chat and then slowly dove into more candid conversations. “My daughter was just diagnosed with Asperger’s,” she

From there, the conversation flowed, and our relationship deepened. We found a common connection that brought us both such encouragement. We realized that we shared many of the same feelings including the perception that our child was the only one on the autism spectrum in a seemingly endless sea of “regular” children.

out our hearts. Those meetings were equal parts life-changing and life-giving. We shared our joys, challenges, and frustrations. We gleaned wisdom from those who faced similar situations. We felt a sense of camaraderie and support that could only be given by those in the same situations. As our kids have grown and become busier, it became more difficult to meet in person. We transferred our group onto Facebook. Via the web, moms have continued to seek and find encouragement from other parents of children on the spectrum.

Soon thereafter the three of us met at the park. From there, our circle grew with the addition of friends of friends, neighbors, and parents of classmates.

Readers, I don’t know where you are in your journey with a special needs child. Do you also feel alone and like the only one with a son or daughter that functions differently in the world? If so, I implore you to look for others in the same situation. Those mothers are out there also looking for you. You need each other. And when you finally connect, don’t stop there. Look for more mothers you can come alongside and encourage, too.

As we continued to get larger, we decided to make the group more organized and accessible to our community. So, we created a support group that met monthly at different homes. We sat in a circle on couches and folding chairs and poured

Calling all individuals with special needs, parents, grandparents – would you like to share some inspiration with the community or nominate someone else to be in an upcoming issue of Special Needs Living? Email us at SpecialNeedsLivingIndy@ n2pub.com.

“If we’ve found each other, there have to be others,” I suggested. “I have another friend with a son on the autism spectrum,” she announced. “How about we all get together?”

March 2021 • Special Needs Living

MEET THE GRECO FAMILY p e t e r , l a u r e n , c a r o l i n e , m i c h a e l By Aaron Olson

Peter and Lauren Greco are the proud parents of Caroline (2) and Michael (5 months). Their family currently lives in Carmel, IN, where Peter runs a beauty product manufacturing company called William Roam and Lauren is a stay-at-home mom. Lauren and Peter moved to Carmel in 2018, but feel like they are still very new as Caroline’s condition occupied much of the couple’s free time for their first year and then COVID hit last year. Lauren has said she very much looks forward to becoming a bigger part of the community and developing relationships with other parents. Lauren’s pregnancy with Caroline was normal and went for the full term. However, during labor Caroline’s oxygen was cut off for several minutes and as a result, she suffered from a condition known as neonatal hypoxic-ischemic encephalopathy (HIE). The long term effects of HIE are varied and

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26 Special Needs Living • March 2021

generally not ascertainable immediately after birth. For almost a week, the new parents waited, and in what Lauren describes as one of her happiest memories, Caroline started to cry. Unfortunately, the struggle was far from over. Within the next year it was determined that as a result of the HIE, Caroline developed cerebral palsy, dysphagia (problems swallowing), and strabismus (visual delay). As a result, she would be developmentally delayed, suffer from motor impairments, and have to eat from a gastrostomy tube. Lauren’s advice to other parents is to focus on the present. She says “when your child’s future is uncertain, it can be painful to try to look to the future and ask yourself questions like: ‘will she run, walk, talk, eat by mouth? Have friends? Will she be happy?’” After I shifted my focus from obsessing over the future and what could be and focused more on the amazing child right in front of me, things became a lot better.” Lauren suggests focusing on the day-to-day and learning to appreciate the smaller milestones, and eventually bigger goals will come into focus. Recently, Caroline started to use eye gaze technology to communicate, a computerized device with a mouse controlled by the patient’s eye. While Caroline is still learning, it’s a serious accomplishment. Although Caroline is too young to start school, she attends hippotherapy once a week at TheraPlay. Hippotherapy is a form of physical, occupational and speech therapy in which a therapist uses the characteristic movements of a horse to provide carefully graded motor and sensory input. This is often confused with therapeutic horseback riding which has more of a recreational appeal. In hippotherapy the therapist starts by finding a foundation and then uses the natural gait and movement of a horse to provide sensory input. Five months ago, Lauren and Peter had another child, Michael. The family now enjoys going for walks at West Park in Carmel, spending time outside, and spending time with each other. They are currently planning on doing much more traveling now that Caroline can manage it, and they are looking forward to a more social life in a post-COVID world. Do you have a caregiver that you would like to nominate to be in an upcoming issue of Special Needs Living? Email us at SpecialNeedsLivingIndy@n2pub.com.

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This shows a little girl who uses a walker as she’s interacting with a rowing machine

play our actors performed in our theater – important to note that it illustrates how we have sign language for some of our performances

The Access Pass Provides Affordable Family Fun By Kim Harms

As we slam the door shut on a tough year, there are several things for families to look forward to in 2021 — including hugely discounted prices for qualifying families. The Access Pass program allows families who meet the specifications to visit 12 different Indiana cultural attractions for just $2 per family member per visit, for up to two adults and all dependent children living in the household.

Make sure you call ahead to learn about specific accessibility offerings. For example, The Children’s Museum of Indianapolis offers sensory guides, wheelchairs, deaf, hard of hearing and visual impairment assistance. Learn more here: childrensmuseum.org/ visit/accessibility.

The Access Pass is good at 12 cultural attractions including Conner Prairie Interactive History Park, Eiteljorg Museum of American Indians and Western Art, Indiana Historical Society, Indiana Repertory Theatre, Indiana State Museum & Historic Sites, Indianapolis Motor Speedway Museum, The NCAA Hall of Champions, Newfields, Rhythm! Discovery Center, Terre Haute Children’s Museum, The Children’s Museum of Indianapolis, and WonderLab Museum in Bloomington.

Here to help you put plans in place to give you peace of mind.

Those who qualify include Indiana residents enrolled in Hoosier Healthwise, SNAP and/or TANF. Families can easily enroll online through the Access Pass website (https://www.childrensmuseum. org/access-pass) or visit any of the participating attractions (except the Indiana Repertory Theatre and Indianapolis Motor Speedway Museum) to enroll in person. The Access Pass helped over 4,000 Hoosier families enjoy discounted admission this past year (2020). Access Pass cardholder Phil Kern heard about Access Pass through his son’s case manager and is one of many who appreciates that the Access Pass includes a variety of attractions, “Thank you so much for making the Access Pass available,” he said. “It opens a world of new adventures for people with disabilities and truly makes the world a better, happier, and healthier place.”

Special Needs Planning & Elder Law Attorney

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March 2021 • Special Needs Living

What does the Bible say about disabilities?

pastor’s corner By Paul Hathcoat

What does God think about people with disabilities? What does the Bible say about disabilities? What does God think about people with disabilities? Did He create me this way? These questions and more are exactly what many of the adults involved in my Special Needs ministry ask on a regular basis. This is part 1 of my response. Jesus addresses disability at several points during his ministry. He does not shy away from talking about how and why people came to be disabled as well as how we are to respond to them. There is depth, care and love in his words and heart as He gives us insight into who His father is through His teachings on disabilities. Let’s start with Jesus’ words in the Book of John. Jesus was asked in John 9:2–4 “teacher,” his disciples asked him, “why was this man born blind? Was it because of his own sins or his parents’ sins?” “It was NOT because of his sins or his parents’ sins,” Jesus answered. “This happened so the power of God could be seen in him.” (NLT) As Jesus explains that disabilities are not punishments for some sin or wrongdoing, we begin to understand how important it is to not only acknowledge those in our midst who are living with disabilities but to behold them with respect and honor in order to reflect our Father’s wishes for their lives. Pushing through a life filled with challenge and adaptation because of a disability is one of the highest forms of worship and testimony to the power that God has placed within all of us. I often take for granted my accessible and uncomplicated path through life and wish to expose my community to the everyday experiences of individuals and families living with disabilities. There are respect and recognition that need to be present if we are to truly live in community with all people around us. I also draw heavily from the section in 1 Corinthians 12:12-27 that exposes the tapestry that God has created for us to follow and be a part of in order to cooperate and unify ourselves and others into a whole unit or society of believers. “12 The human body has many parts, but the many parts make up one whole body. So it is with the body of Christ. 13 Some of us are Jews, some are Gentiles, [a] some are slaves, and some are

30 Special Needs Living • March 2021

free. But we have all been baptized into one body by one Spirit, and we all share the same Spirit.[b] 14 Yes, the body has many different parts, not just one part. 15 If the foot says, “I am not a part of the body because I am not a hand,” that does not make it any less a part of the body. 16 And if the ear says, “I am not part of the body because I am not an eye,” would that make it any less a part of the body? 17 If the whole body were an eye, how would you hear? Or if your whole body were an ear, how would you smell anything? 18 But our bodies have many parts, and God has put each part just where He wants it. 19 How strange a body would be if it had only one part! 20 Yes, there are many parts, but only one body. 21 The eye can never say to the hand, “I don’t need you.” The head can’t say to the feet, “I don’t need you.” 22 In fact, some parts of the body that seem weakest and least important are actually the most necessary.” What if we saw each and every one of our neighbors as an integral part of the whole? What if everyone saw individuals living with disabilities as those “most necessary” parts of their communities and created a culture where they served as a catalyst for cooperation, care, and harmonious mindsets? In the nation we find ourselves living within today, God’s view and purpose for people living with disabilities could actually be the advice that breaks through barriers and unites differing opinions and ideologies. As we walk through the second part of this discussion next month, join me in praying that as we uncover the love that our Lord has for people of all abilities, we also start to shed the discontent that many of us have for our fellow community members. Author’s Notes – If you want to read more about the sources used in this letter each month, or hear about the disability ministries around you, feel free to contact Paul Hathcoat at the information below.

Scriptures referenced – 1 Corinthians 12:12–27 Paul Hathcoat Email: phathcoat@wrcc.org Ph #: 317-840-5558 Do you have a thought, idea or information that you would like to see in this section in an upcoming issue? Email Paul Hathcoat – phathcoat@wrcc.org.

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March 2021 • Special Needs Living

special needs living – sponsor of theBy Maria month Smietana

S E R V E TOGETHER In six short years, Lindsay and Frank Knez have expanded K1ds Count Therapy from its first location in a small farmhouse in Brownsburg, IN, to the second one in Crawfordsville and are looking to open a third location within the next year. In addition, they serve approximately 35 public and charter schools around the area. K1ds Count Therapy provides speech, occupational, physical, and mental health therapies to all children as well as a comprehensive autism services program that is grounded in ABA therapy. The Knezes have called the Brownsburg community home for the last 11 years. They feel that faith drives their mission to SERVE Together with their KCT team to positively impact kids, families, and the community. “The little farmhouse has grown into a campus of six buildings,” Lindsay said, “and we have developed such supportive relationships with the Town, the Parks and Recreation Department, and the local schools.” The Crawfordsville location came about because as a Wabash College graduate, Frank had a soft spot in his heart for the community. Equally important, the Knezes wanted to bring comprehensive therapy services to a very underserved area of the state.

32 Special Needs Living • March 2021

Within the next year, they hope to open their third and final location on a 12-acre plot in Whitestown. They feel connected to Whitestown through Traders Point Christian Church and School, where the family worships and the children attend school. “We are excited to open a new center with large, simulated classrooms, acres of land for K1ds Count Therapy inclusive athletic programs, and much more!” Frank said. Lindsay, a Bloomington, IN, native, has been working to help children with autism and their families since she was 18 years old. As a high school senior, she worked for a buddy’s program and then at a group home, serving six children with autism every weekend, something she continued while attending college at IU. “Those kids were like family,” she recalled. “They gave me a sense of purpose since I was considering a career as a speechlanguage pathologist to give all children a voice.” After staying on at IU to earn a graduate degree in speech-language pathology, Lindsay worked for First Steps, outpatient clinics, and at Damar, a residential school on the far southwest side of Indy for children with autism and other developmental challenges.

At Damar, Lindsay said, “I served so many children for many years. I became a board-certified behavior analyst (BCBA), had the chance to work and collaborate with other disciplines, learned about Language Acquisition through Motor Planning (LAMP), and had several great mentors.” Frank and Lindsay met when she first joined the team at Damar Services as a speech-language pathologist. Frank also became involved with Damar and volunteered on behalf of Gatorade, his employer at the time, to help support the Damar Prom. Frank loved serving the kids, and from that point on, he and Lindsay began a journey together to help kids and families. “We met wonderful people dedicated to the same mission along the way,” Frank said. This team became K1ds Count Therapy, serving all children in need of ABA, and speech, occupational, physical, and mental health therapies and services.” Lindsay believes that the truly comprehensive service model of K1ds Count Therapy is what makes it unique. “As a therapist and a mom, I know that each therapy discipline can play such an important role for a child,” she said. Some children may need March 2021 • Special Needs Living

New Outpatient and Admin Building

many types of therapy, while others might require only one or two, but having them all under the same roof is not only more convenient for families, it allows for a more coordinated care plan for the child. Lindsay and Frank encourage parents of children of all abilities to always remember and celebrate the “little things.” When they started K1ds Count Therapy, their first son was just 6 months old, and he went to work with them daily. K1ds Count Therapy has been instrumental in his development. This year, he began kindergarten and received a book called Oh, How I’ve Grown, a reminder of all of the “little things” as he continues on his journey through school. As parents, we know that each “little thing” is also a great accomplishment!” Now the parents of three boys, Lindsay and Frank don’t have much free time. However, as the children who have been served at K1ds Count Therapy grow into adults, some of the parents of those kids inspired the

34 Special Needs Living • March 2021

Knezes to start a non-profit company called Building Essential Skills Together (BEST) to create employment opportunities for adults of all abilities. See www.buildingessentialskills.com to learn more! Business Contact Information Frank Knez K1ds Count Therapy 1353 E. Main St. Brownsburg, IN 46112 Phone Number: 317-294-5242 www.kctherapy.com Frank@kctherapy.com

March 2021 • Special Needs Living

Pioneer Parents in Indiana March is Developmental Disabilities Awareness Month, so this article is about remembering a couple of Pioneer Parents who have passed away. Some of the By Angela Arlington information was collected from the Arc of Indiana’s #60Stories60Years, created in 2016, and has been reprinted with permission. Dorothy Burnside and Ilene Younger Qualkinbush The Arc of Indiana was founded on September 25, 1956, by families seeking a better world for their Dorothy Burnside sons and daughters. Dorothy Burnside and Ilene Younger Qualkinbush helped found the state association and were The Arc of Indiana’s first lobbyists at the State House. Ilene went on to become The Arc’s first paid staff member and later The Arc’s first woman president of the board. Their many years of service and dedication did indeed help make a better world for people with Intellectual and Developmental Disabilities (I/DD), and their legacy continues to make a difference. Dorothy passed away in 2018 and Ilene passed away in 2020.

Venus Abbit

36 Special Needs Living • March 2021

Ilene Qualkinbush

The Arc of Indiana co-sponsored Indiana’s first Special Olympics games with 1,000 athletes in 1969. The organization has many programs and resources, including Public Policy Advocacy, The Arc Master Trust, The Arc Advocacy Network, Insurance Advocacy Resource Center, Career Counseling Information and Referral Services, Podcasts, and Publications. To learn more visit www.arcind.org. Venus Abbit and Mary Smith Venus Abbit and her husband had no idea where their journey would lead when their daughter, Carolyn, was born in 1946. When Carolyn was nearly 3, Venus was told that Carolyn was “mentally retarded, a little slow, but she might ‘grow out of it.’” Although she began school in first grade, when she reached third grade she was told she could not come back because there was no teacher for her. Venus recalls that Carolyn cried because she loved school. It was shortly thereafter in the early ‘50s that a simple family photo changed many lives for the better. While

Venus was at a dentist appointment, she began talking with her dentist’s wife, Mary Smith, who worked in the office. She noticed a family photo and it appeared that their son Bobby had a disability. She could have kept quiet, but, instead, she shared that her daughter also had a disability. The two women agreed they had to get together. Before long they had organized nine families and started the first program in the area for children with disabilities at First Baptist Church in Bloomington. Many fundraisers and several years later, these founding families helped to establish Stone Belt Arc, The Arc in Monroe County. Carolyn’s journey has taken her from school to work, to becoming an accomplished artist, with a studio in her own apartment, where she lives with her friend Angie. Venus continued to attend meetings at Stone Belt Arc until her death. The 12 Chapters Project explains Stone Belt’s history at www.stonebelt.org: 1970 – Stone Belt opened one of the state’s first group homes, and then, in 1974, opened two more at what is now the Indiana Institute for Disability and Community. At the time, this was convenient, since the property was adjacent to the Stone Belt Center. 1972 – The Lawrence County Arc was formed and started a cooperative relationship with Stone Belt to provide the services in a house on Norton Lane. In that same year, Geraldo Rivera’s expose’ on Willowbrook (the state institution for the mentally disabled on New York’s Staten Island where children were abused, neglected and subjected involuntarily to medical experiments) brought about reforms and began the eventual closures of many state-run institutions. 1973 – A Recycle Building was added so community residents had a convenient place to drop off glass, metal, and paper recycling. 1975 – Public Law 94-142 mandated that all children with disabilities receive a free and appropriate education. This created a formal partnership

Ilene Younger, right, the first staff member for The Arc of Indiana, hired as a part-time executive secretary in 1963.

between Monroe County Schools and Stone Belt where some of the community’s children would continue to be educated. 1978 – The Adult Building was added to expand the size of the workshop and the Adult Day Activities program. Otis Elevator was the largest subcontractor for the work program at the time. The late 1970s – A residence for children was added on Tapp Road. 1981 – The Lawrence County Achievement Center, Larc, opened in Bedford to serve residents in that county. Stone Belt continued the relationship with the local ARC to provide adult services in the new facility. If you would like to be a part of this Pioneer Parent section or to nominate someone else to be in an upcoming issue of Special Needs Living, email us at SpecialNeedsLivingIndy@ n2pub.com.

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317-698-5264 | teamrichards25@yahoo.com March 2021 • Special Needs Living

38 Special Needs Living • March 2021

Heart SOS by Julie Gordon, MSW, LCSW

Part 2: Hope, Motivation & ASD “It’s been so long since I have seen you! Let’s go have coffee together tomorrow and catch up. And if you talk to me for 20 minutes, then you can take a break and scroll Instagram for a while by yourself,” said no friend ever. If we want to increase the likelihood that we will work toward meeting our goals, we need our experience to be reinforced, internally or externally. When we are positively reinforced, something is added to our experience to make us want to keep working toward our goal. When we are negatively reinforced, something is taken away from our experience to make us want to keep working toward our goal. Why do we focus so much on external reinforcement to motivate in the field of ASD and special education? Working for tokens, electronics, money, “being in the green” and even a vague “good job” can be a quick and effective way to provide reinforcement for specific types of remediation goals. These goals are generally related to sustaining attention for instruction and task completion. While external reinforcement is effective for the short term, it may not be lasting for the long term. It can also have unintended consequences: passivity without self-advocacy, words without meaning, performance without comprehension and compliance without thought. When we are internally or automatically reinforced, the motivation to do something can come from basic human needs like eating to satisfy hunger or from psychological needs like learning to cook for independence. Human beings have an innate desire for autonomy, to relate to others and for the personal joy of overcoming a challenge. This drive gives us a reason to “bother” when faced with novel and tough experiences because we know that the experience will lead to accomplishing our end goals and desires. This is the heart of intrinsic motivation. If we reinforce social, emotional and cognitive goals with tangible items, the external reinforcement ceases to become effective, eventually losing its inherent value to the individual. In this case, the individual may only engage for the external reward and not because they desire to or enjoy it. A greater therapeutic concern is when the reinforcement borders on bribery. If your friend bribed you to go out for coffee, the experience will neither be positive nor meaningful. Therefore, when the treatment goals are related to executive functioning for problem-solving, social communication, informational processing and coping skills, internal reinforcement would be the natural, logical consequence. While we sometimes seek outside appraisal on many things, our healthy sense of self-worth comes from our own experiences. Intrinsic motivation is necessary for our well-being, skills generalization and lasting outcomes on goals. As we learn to navigate the world, we are in a constant state of trial and error. We explore this first with our parents and then try to elaborate on what we learned in our own way. We seek to find what works for us and what doesn’t. We are not trained with a set of right and wrong answers; life is too complicated and nuanced to teach every possible scenario. Therapy is only as good as its ability to empower an individual with the tools they need to master a foundation of dynamic skills that can carry them through most situations. Developing the motivation to try new things, meet new people and take on obstacles requires feelings of competence that can only come from experiences of personal success or overcoming failure. Further, those experiences need to be reinforced intrinsically and encoded into our episodic memory so that we are more confident in taking on opportunities as they come no matter the setting, person or topic. There is hope. With the help of a qualified clinician, create small developmental goals that increase competence in dynamic, executive functioning skills instead of focusing on passive compliance within static activities. Then, the clinician can help adjust reinforcement schedules from external to internal. The individual with ASD will gain broader skills that are naturally generalized because the personal experiences are internalized, recalled and applied in a meaningful way. When you feel competent, you are motivated to be better from within. Julie Gordon has been in the field of ASD for 19 years. She is the owner of The Hope Source and Heart SOS as well as the founder of Dynamic Minds Academy.

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March 2021 • Special Needs Living

living

Special Needs

Indianapolis & Surrounding Areas

Special Needs Living March 2021 Digital Issue

Articles inside

Part 2: Hope, Motivation & ASD

Pioneer Parents in Indiana

Special Needs Living – Sponsor of the Month - K1ds Count Therapy

Pastor's Corner - What does the Bible say about disabilities?

The Access Pass Provides Affordable Family Fun

Meet the Greco Family - Peter, Lauren, Caroline, Michael

A Moment of Inspiration – When You Feel Like You're the Only One with a Special Needs Child

A Moment of Inspiration - NO PRESSURE, but we'll remember this moment forever: 10 tips for Delivering difficult Pediatric Diagnoses

siblings perspective - Meet Megan & Claire Strauss

THE ABC’S OF IEP’S

What it's Like to Live with Autism

Non-Profit Spotlight - Autistic Abilities Organization

What Accommadations Should My Child Recieve at School?

I don't have any or few assets - WHY DO I NEED A SPECIAL NEEDS TRUST?

GLOBE STAR, LLC and Gentle Teaching

Here is How you can be Involved

PUBLISHER’S NOTE - How we keep our special needs son out of his poop

Meet Aura Roblero, Marlon Cabrera, Ernesto, Marlon, Ivania