Special Needs Living June 2021 Digital Issue by Uniquely You

living

Special Needs

June 2021

Indianapolis & Surrounding Areas

ON THE COVER:

The Johnson Family Eric, Julie, Cole, and Gavin TO RECEIVE THE DIGITAL COPY TEXT: SNL TO 55433

INSIDE: • Father’s Day Shout Outs • Non-Profit Spotlight – New Hope of Indiana serves up Independence • Meet the Dunklau Family – Front-Line workers • Sponsor Spotlight: Sheila Wolfe – IEP Services • Sibling Perspective: Meet the Sell Sisters • Pioneer Parents: Matt Volk and Noah’s World • The ABC’s of IEPs • Sans Gluten – Where To Get Your Gluten-Free Doughnut Fix on National Doughnut Day and After • School or ABA • Supporter Spotlight: The Jeff Carroll Group • Meet the Smith Family • Pastor’s Corner: What to look for in a Quality SN/Disability Ministry • Local Events and More

CONNECTING - INSPIRING - EDUCATING - FAMILIES WITH SPECIAL NEEDS

2 Special Needs Living • June 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 317-233-4454

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

317-232-7770

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

800-609-8448

Autism Society of Indiana www.autismsocietyofindiana.org

877-241-8144

Blind and Visually Impaired Services (BVIS)

800-545-7763

Bureau of Developmental Disabilities Services (BDDS)

812-855-6508

Indiana Resource Center for Autism https://www.iidc.indiana.edu/irca

800-545-7763

Bureau of Rehabilitation Services (BRS)

317-233-1325

Indiana State Department of Health

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

844-446-7452

Indiana Statewide Independent Living Council (INSILC)

800-622-4968

Disability Determination Bureau

855-641-8382

Indiana Works

888-673-0002

Division of Aging (IDA)

800-332-4433

INSOURCE http://insource.org/

800-403-0864

Division of Family Resources (DFR) 800-457-4584

Medicaid Disability

317-232-7800

Division of Mental Health and Addiction 317-232-7770

Medicaid Waivers

317-925-7617

Down Syndrome Indiana https://dsindiana.org

800-772-1213

Social Security Administration (SSA)

877-511-1144

Early Childhood and Out of School Learning (OECOSL)

317-466-1000

Easterseals Crossroads https://eastersealscrossroads.org

911

Family Voices Indiana www.fvindiana.org

800-545-7763

First Steps www.cibaby.org

574-234-7101

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

Social Security Disability Insurance (SSDI)

877-851-4106

Special Education Questions

317-871-4032

United Cerebral Palsy Association of Grater Indiana https://www.ucpaindy.org

800-545-7763

Vocational Rehabilitation Services (VR)

Emergency

844-323-4636

317-232-0570

1-800-772-1213

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.

June 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

ADULT DAY CENTER Adult Day Centers Jay Lugosch (317) 296-8815 ASSISTANCE DOG Indiana Canine Assistant Network, INC. (ICAN) (317) 250-6450

The Indiana Institute for Behavior Analysis, LLC (317) 388-8131

ATTORNEY-WILLS/TRUSTS/ ESTATE PLANNING Law Office of Elizabeth A. Homes LLC (317) 660-5004

ABA/COMPREHENSIVE SERVICES The Hope Source (317) 578-0410

CASE MANAGEMENT Connections Case Management (317) 440-0637

ACCESSIBILITY PRODUCTS AMRamp (260) 519-1935

IPMG - Indiana Professional Management Group (866) 672-4764

4 Special Needs Living • June 2021

CAT CARE & SITTING Bastet Cat Care & Sitting (317) 919-1948 CBD SUPPLIER Indy CBD Plus (317) 961-0191 DENTAL CARE Children’s Dental Center (317) 842-8453 FINANCIAL Munder Financial James Munder (317) 238-6621 WestPoint Financial Group Gordon Homes (317) 567-2005 FUNCTIONAL MEDICINE Wholestic Nutrition (317) 429-0111

GYMNASTICS Body by GymRoots Studio (317) 579-9300

MOBILITY / ACCESSIBILITY CYA Mobility (317) 530-2541

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

MORTGAGE CrossCountry Mortgage (317) 666-4679

Ritello Clifton Herbert (661) 317-6157 INSURANCE State Farm John Cole (317) 430-1958 INVESTMENT MANAGEMENT Dan Claxton Investment Advisory & Broker Dan Claxton (317) 250-8080 LANDSCAPING/LAWN CARE/ LANDSCAPE LIGHTING Franco Landscaping, Inc (317) 858-3858 MASSAGE INSP Center Thai Clinical Massage Joyce Detrich Detrich (317) 771-5698

REMODELING/CONSTRUCTION Ray’s Construction LLC Ray Valverde (317) 515-5308 SCHOOL Dynamic Minds Academy (317) 578-0410

NEUROFEEDBACK THERAPY Indy Neurofeedback (317) 888-8500

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

PEDIATRIC THERAPY Wee Speak (765) 446-8300

SCULPTURE, POTTERY & ART Ripple Mobile Arts (317) 514-8469

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

SPECIAL EDUCATION CONSULTING IEP Services, LLC. Sheila Wolfe (317) 573-9610

REALTOR F.C. Tucker Nicole Lyon (317) 501-0639

SUPPORT SERVICES Easterseals Crossroads (317) 466-1000

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

THERAPY & TESTING SERVICES The Brain Center (317) 748-0034

Roadmap to your waiver journey:

Journey Destination To-do:

Visit the BDDS new Gateway @ bddsgateway.fssa.in.gov Select your tour guide (CMCO) Plan your Person-Centered Adventure! Call Connections to get directions!

Connections provides Medicaid Waiver Case Management and serves all Indiana counties.

Connect with our case managers today! 317-710-7184 • connectionsin.com June 2021 • Special Needs Living

MEET THE Special Needs Living JAMIE MCCABE Publisher & Area Director

BRITTANY LOWE Event Executive

HEATHER GREGG Photographer 21 Vines Photography

MARIA SMIETANA Editor & Writer

TEAM WRITER & CONTRIBUTORS

CARLA MILLER

MATT KNIGHT

6 Special Needs Living • June 2021

ERIN BOAZ

AARON OLSON

PAUL HATHCOAT

ANGELA ARLINGTON

SHEILA WOLFE

LAURA SPIEGEL

SHANNAN PENAFLOR

REBECCA WOOD

LISA MONGE

MAUREEN MARSH

ZACH ELLIOTT

CHRISTINA MCGAIRK

INDEPENDENCE IS YOUR RIGHT

HOME ACCESSIBILITY AND MOBILITY EXPERTS FOR SALES, SERVICE AND INSTALLATION OF ACCESSIBILITY & MOBILITY EQUIPMENT, GIVE US A CALL TODAY!

We service most major brands! CYA Mobility | 570 E Tracy Rd. STE 660 | Whiteland, Indiana 46184 317-530-2541 | anthony@cyamobility.com | www.cyamobility.com Local, Woman-Owned Business

June 2021 • Special Needs Living

8 Special Needs Living • June 2021

behavioral, emotional, or physical. Stories are largely written by our readers. It is for you, by you, and meant to connect you. Oftentimes we can feel alone and isolated. The stories shared here will give hope, inspiration, and encouragement; perhaps even shift your perspective. If you have a story you would like to share, 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. We would love to share any milestones that your child has accomplished. Maybe it is getting dressed on their own, eating on their own, using the restroom, communicating, getting a driver’s license, graduating from high school/college, getting their first job, or living on their own. Email photos and a caption to SpecialNeedsLivingIndy@n2pub.com.

PUBLISHER’S NOTE

I always love the month of June. It is halfway through the year, yet half is left to go. I always reflect on how the first part of the year has gone and where the rest of the year is going. If I am on track, it excites me and motivates me. If I am behind, I think of the midway point as a restart and make some adjustments for the rest of the year. June is personally a very busy month for our family. Our special needs son Jordan turns 9 this year, our daughter Jaylin turns 4, and my husband Justin has a birthday, too (I won’t say how old he will be so as not to embarrass him). It’s also Father’s Day. It is a jam-packed month for sure. I want to take a moment to say thank you to all the men out there – fathers, grandfathers, stepdads, uncles, friends, caregivers, etc. I know I would not be the person I am today without my dad. He most certainly taught me hard work, dedication, and a fearlessness to never give up. I also could not be the business owner I am or dedicate my time to the community serving others, if it was not for my husband and father of our children, Justin. I sometimes do not give you the credit you deserve for stepping up and helping out where needed. You are so dedicated to Jordan and our family and are such a wonderful father. I know it is not always easy and there are many challenging days. You have such patience with Jordan and the girls; we make a great team! Thank you! I want to definitely honor and thank all the men out there who help make the special needs community a better place! Special Needs Living is designed for individuals with special needs and families who have a child with any type of special need, whether psychological,

To keep up with events, stories, and things we are looking to add to the magazine, you can follow us on our Facebook page: Special Needs Living magazine. You can view our monthly digital versions there also, or text SNL to 55433 to have the digital version texted to you. I also want to let you know that we now have an easy way to share stories. You can put your camera over the QR Code here and it will take you to the site where there are several story options. You can pick a story that relates to you and answer the questions you like. Note that you do not have to answer them all. You can upload photos here, too. It is stories like yours that inspire and impact others, may shift thinking, or give hope and encouragement. These stories also make nice keepsakes that you and your family can treasure for years to come. Thank you to all of the supporters who have chosen to be involved and help make Special Needs Living possible each month!! If you are personally looking for support, feel free to connect with any of them as they would be more than delighted to help however they can. We hope you enjoy the June issue of Special Needs Living. We welcome feedback, thoughts, or ideas. It is such a blessing to bring this magazine and resource to you each and every month! Your Publisher, Jamie McCabe 248-882-8448 Jamie.McCabe@n2pub.com June 2021 • Special Needs Living

Smith MEET THE

Family

Sharon’s Web Autism Foundation Q: What is Sharonsweb Autism Foundation?

community CAN do. It’s about creating opportunities and giving a voice. Noah is chapter 4 in The Ancestors Within - released on Amazon May 4, 2021. This chapter explains more of what we do.

A: Sharonsweb Autism Foundation (SAF) is a 501(c)(3) non-profit dedicated

Q: What is facilitated communication?

Photos by Heather Gregg – 21 Vines Photography

toward helping special needs individuals with communication and inclusion. Q: How was Sharonsweb Foundation started?

A: Sharon Smith is a facilitator and demonstrates with the person needing communication assistance. Training is for the parents and caregivers.

A: Sharon Smith started the foundation in 2011 after years of attending health fairs and autism events. Having 3 children on the autism spectrum, Quinn (25) with Asperger’s Syndrome along with Noah (23) and Adriana (21) who are both non-verbal. In 2016 Noah and Adriana began communicating using facilitated communication.

Q: How can others get involved in the organization, either as a volunteer or a place to find support for their special needs children?

Q: What is the focus of Sharonsweb Foundation? A: The foundation is not limited to autism but our main focus is adults with limited or no conversational speech. But more so it is about what our autism

10 Special Needs Living • June 2021

A: If you feel so inclined to donate your time, the foundation will be extremely grateful. Those who have participated in Best Buddies or Unified Track and related programs may be interested in participating in events for inclusion in the community.

eBay sellers receive extra promotion on social media by participating in eBay for Charity and designating a percentage deducted AFTER sales. See www.sharonsweb. com to check our calendar for events and get our contact information. Q: What does your family do in their free time?

YES

Voice may not match thoughts. May need body support for pointing with purposeful movements. Ask yes/no questions and give written choices. 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.

A: We like to spend our time at Force Barbell in Fishers where both Noah and Adriana participate in powerlifting! No special Olympics powerlifting this year but EVERYONE is included in training and optional competitions! This is a great opportunity of teens and adults of all abilities to workout with a caregiver, peer helper and make new friends at the gym.

Looking to let your inner champion shine? Explore movement & exercise with individuals with Diff-abilities throughout the world!

Hannah - Champion of Independent Performance

BODY Pilates • BioCored • Perfect 10 Posture

Virtual Classes Champions Class Free for everyone! YouTube Channel to view all of the previous classes from Olympians & International experts throughout the world. Email Paula@gymrootsinc.com to be added to this amazing group or to ﬁnd out more about how to be involved!

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

By Maria Smietana Photos by Heather Gregg – 21 Vines Photography

Dunklau Family Diane, Caroline, Kiersten, & Bridget Caroline, Diane, Kiersten and Bridget Dunklau

Save the Date! Puppies and Ponies at Sunset

Friday, July 16, 2021 - Hickory Hall Polo Club 7551 E. 100 N. Whitestown, IN 46075

Kiersten modeling the surgery caps we made for the Life Line

As the mother of three adult daughters, two of whom are on the autism spectrum, Diane Dunklau has paved the path for many younger parents whose children have a similar diagnosis. A special education resource teacher at White River Elementary in the Noblesville Community Schools, Diane moved here from Michigan with her now former husband more than 33 years ago. All three of her daughters grew up in Noblesville. “We were among the first families to ‘storm the beaches’ of autism in the school system,” Diane recalled. “We worked to help the girls (Kiersten, now 31, and Caroline, 29) navigate through school and learn independence. Now that they are adults, we are learning to find and secure employment.” Diane’s youngest daughter, Bridget, is neurotypical. She lives and works in Bloomington, IN.

Gates Open at 5 p.m. A family friendly event to benefit the life-changing missions

Kiersten went through the College Internship Program in Bloomington and attended Ivy Tech. Caroline was a member of Project Search at Carmel St. Vincent. Both programs were designed to help students with special needs find their independence and future life.

of ICAN and Morning Dove Therapeutic Riding

Learn more at www.icandog.org or www.morningdovetrc.org 12 Special Needs Living • June 2021

Both young women now work in assisted living facilities, Kiersten in the Lodge at Harbour Manor in the center of Noblesville, and Caroline at Sanders Glen in Westfield. They continue to live at home with Diane in the North Harbor neighborhood where they grew up, along with Ava, the family’s little Maltipoo.

is the only worldwide service club for adults with disabilities. She has also acted in a play at Theater Without Borders. “Lyft and Uber changed their lives, enabling them to have transportation and independence,” Diane noted.

The pediatric helicopter crew and the COVID staff at St. Vincent.

For Diane, it’s important to help her daughters flourish by not only reminding them of their own value but also by teaching their employers and coworkers the value of a special needs employee. “In the last year they have become front-line workers,” she said. “They have put on their protective gear and gone to work to take care of others in the wake of this pandemic. When they had to work on days like Christmas and Thanksgiving, we talked about how they can be a blessing to the residents who have been quarantined in their rooms for months and are not seeing their families. In a way, Kiersten and Caroline have become their families. They have filled some of the gaps of loneliness and isolation.” Diane’s experience with her daughters gives her a unique perspective as she works with families of young children with special needs. “I think Kiersten and Caroline are great examples of the potential of people who are different from the norm to make a big difference in the world,” she said. That positive influence extends well beyond the workplace. Alongside Diane, the two sisters are active in their church, helping with the children’s Sunday school program. Caroline is the president of her Kiwanis Aktion Club chapter. An extension of Kiwanis International, Aktion Club (https://www.aktionclub.org)

Both sisters continue to benefit from therapy at Opportunities for Positive Growth, Inc., (https://www.opgrowth.com) though some of it has been virtual since the pandemic started. Caroline attends pet therapy and music therapy. Kiersten gets recreational and behavioral therapy as well as music therapy. Of course, some of the best therapy of all is traveling to spend time with loved ones. The Dunklau clan frequently goes back to Michigan to spend time with extended family. And wherever they are, Caroline and Kiersten love to relax by drawing, listening to music, and watching movies. For Diane, some of her best moments over the past year have come from the smiles her daughters have brought to so many of their clients. “Caroline was caring for an elderly resident who used to raise horses, so when she would clean his room, she would tell him she was there to ‘muck out his stall and clean the tack,’” she recalled with a chuckle. “I also feel like my girls have received so much love and appreciation from those whom they serve.” When asked if she worries about what will happen to her daughters when she’s no longer here, Diane has a refreshing answer. “Every day, I work to empower them to do more and more for themselves. Even though we’re family and love each other very much, our day-to-day interactions are more like roommates. By the time I’m gone, my expectation is that they will be totally able to run their own lives.” 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.

June 2021 • Special Needs Living

The ABCs of IEPs

By Sheila Wolfe IEP Services

In almost every article I have written for this column, I mentioned the importance of data to appropriately inform the case conference committee’s (CCC) decisions regarding the needs of any student. The collection of meaningful data serves three basic functions: 1) To determine present levels of performance to set appropriate goals. 2) To determine if the chosen instructional approach/methodology is effective. This is also referred to as response to intervention, or RTI. 3) To report periodically on the progress of the student toward meeting the annual goals in the IEP.

We reviewed in a previous article the importance of getting an appropriate and thorough educational evaluation to understand the student’s present levels of performance in all areas of concern. By getting accurate data regarding the student’s current

Do you need help getting your child with special needs the services they NEED and DESERVE at school? Professional Parent Advocate with 20 Years Experience Specializing in Developing IEPs that WORK Experienced in All Disability Categories Autism Expert Helping families receive a meaningful education for their children in public schools

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sheilawolfe@sbcglobal.net Please email for more information.

14 Special Needs Living • June 2021

skills, the case conference committee can set appropriate goals for student achievement in the next IEP year. For example, if a student is currently comprehending written material with 80% accuracy at the 4.2-grade level, the CCC would want to write a goal for the student to reach a reading comprehension grade level of 5.2 by the end of the IEP year. In addition, the student’s IEP must describe in detail the method and frequency for progress monitoring of every goal. It is extremely important to understand the type of academic progress monitoring assessment proposed by the school during the case conference. Parents need to insist that the school use a curriculum-based measure (CBM), such as AIMSweb, DIBELS, etc., when progress monitoring a student and not a “mastery measurement,” which is a typical test given at the end of a certain skill being taught in the classroom (i.e. 20 addition problems with regrouping to test if the student understands how to do this skill). Mastery measurement testing can be problematic since performance on a single skill assessment can be misleading. It also does not account for generalization or check for skill retention over time. CBM assessments focus on general outcome measures and not one skill. In other words, the skills needed to achieve, for example, an understanding of first-grade math, not just math facts. These tests are research-based (which is a requirement if being used as part of an IEP) and are standardized for administration and scoring. CBMs provide an easy and reliable way to monitor student progress on a regular schedule as dictated by the CCC/IEP. A CBM assessment generates the data needed to inform the educational team regarding the student’s response to intervention (RTI). This allows the team to make needed adjustments to the student’s instruction if adequate progress is not being made, with no need for additional testing. Parents need to become familiar with the school’s RTI protocol. This is a link to just one of many websites describing RTI and how to use it to improve student progress – http://www.rtinetwork.org/learn/research/ progress-monitoring-within-a-rti-model. Each school has some form of RTI in the areas of language arts and math. ALL students should have the opportunity to intensify their instruction if they are falling behind gradelevel standards. Typically, this involves a combination of other

“

curriculums and smaller group settings. The most intense tier of RTI would be one-on-one instruction. Lastly, schools can use the data collected from periodic CBM assessments to report on adequate yearly progress (AYP) for each student. By designing the progress monitoring plan correctly in the IEP, the school should be collecting data through the CBM assessments (or other valid data collection means for non-academic goals) on each goal in the IEP multiple times per grading period. This data can be graphed and analyzed by the parents and school to determine if the student is making progress that is significant enough to meet the goals set in the IEP by the end of the year. I tell all my parents, “DATA is your BEST friend.” It needs to be collected frequently and be meaningful. Giving a student a reading fluency test one time per grading period right before the progress report comes out is meaningless. Subjective teacher observation reports are meaningless as well when reporting on academic skills. This is a critical area for parent advocacy during a CCC meeting. Do your research and be prepared to make your own recommendation for appropriate progress monitoring plans. A great resource is https://intensiveintervention.org/ intensive-intervention/progress-monitor. Sheila A. Wolfe IEP Services, LLC sheilawolfe@sbcglobal.net

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(317) 565-1450 WWW.DESTINATIONREGEN.COM 11495 N Pennsylvania St #100 Carmel, IN 46032 June 2021 • Special Needs Living

Events provided by : Brittany Lowe Event Executive

local events

Important Note: Prior to attending any events please be mindful of any COVID-19 restrictions. Please review the state mask covering executive order. There are exemptions within the order that include children under 2 years of age should not wear a face coring 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. Note: Don’t forget to apply for the Access Pass! The Access Pass 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:

Indianapolis Indians Games June 1 to June 6 Victory Field 501 West Maryland St. Indianapolis, IN 46225 317-269-3542 https://www.milb.com/indianapolis/ballpark/faq

Indianapolis Indians Games June 29-July 4 Victory Field 501 West Maryland Street Indianapolis, IN 46225 317-269-3542 https://www.milb.com/indianapolis/ballpark/faq

THE ARTS Smoke on the Mountain May 4–June 20, 2021 Beef and Boards 9301 Michigan Rd. Indianapolis, IN 46268 317-872-9664 https://www.beefandboards.com/Online/default.asp

• 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)

The Sound of Music June 24-Aug. 15 Beef and Boards 9301 Michigan Rd. Indianapolis, IN 46268 317-872-9664

Apply Here: https://www.childrensmuseum.org/visit/

https://www.beefandboards.com/Online/default.asp

hours/access-pass

MUSEUMS Nickelodeon’s Dora & Diego-Let’s Explore March 16-July 11 Children’s Museum of Indianapolis 3000 North Meridian St. Indianapolis, IN 46208 317-334-4000 https://www.childrensmuseum.org/exhibits/ dora-and-diego-lets-explore

The House that Jack Built Streaming via Indiana Repertory Theatre May 27–June 20 https://www.irtlive.com/your-visit/accessibility

Friday’s at the Fort June 4 and 18 6:00 pm–8:00pm Fort Ben Cultural Campus 8920 Otis Ave. Lawrence, IN 46216 https://www.artsforlawrence.com/event/fridays-at-the-fort/

SPORTS Indy Fuel Hockey Games June 2 Indiana Farmers Coliseum 1202 E. 38th St. Indianapolis, IN 46205 317-927-7500 https://www.indyfuelhockey.com/ schedule#select_team-schedule=0

16 Special Needs Living • June 2021

Tea Party June 6 4:30 pm–6:30 pm Fort Ben Cultural Campus 8920 Otis Ave. Lawrence, IN 46216 https://www.artsforlawrence.com/event/tea-party/

FESTIVALS

EDUCATION SERIES

Indy Pride Virtual Festival June 12, 2021 Virtual

Government Programs and Benefits Indiana Resource Center for Autism June 28 6:30–8:00pm Virtual https://iu.zoom.us/webinar/register/

https://indypride.org/indy-pride-festival/

WN_JAZmhsauTnSzPkrysEhz0Q

ABLE Accounts & Guardianship Indiana Resource Center for Autism June 19 6:30–8:00pm Virtual https://iu.zoom. us/webinar/register/ WN_JAZmhsauTnSzPkrysEhz0Q

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.

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.

June 2021 • Special Needs Living

Empowering Lives

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Evansville 101 NW 1st Street Suite 118 Evansville, Indiana 47708 (812) 636-1533

Indianapolis 8650 Commerce Park Place Suite A1 Indianapolis, IN 46268 (317) 388-8131

www.tiiba.org Follow Us on Facebook & Instagram @TIIBARocks 18 Special Needs Living • June 2021

pastor’s corner By Paul Hathcoat

What to Look for In a Quality

SN/Disability Ministry In my experience and after some polling of the families in my own ministry, I have come up with a guide of sorts for you moms, dads, and caregivers out there, looking for or evaluating a special needs ministry in your area. Not all churches and not all ministries are alike. I wanted to give you readers an informed and researched starting point to aid you in your search and assessment.

Let’s start with the most important factor, competent leadership, and volunteers. A friend of mine and mom to one of my favorite kiddos living with Down syndrome in the world, Christie Heller from Evansville, IN, says that “having welltrained volunteers that know how to navigate people with special needs, how to talk to parents in positive ways, and can see the individual as a valuable contributor to this world no matter their level of function,” is the most important factor when choosing a disability ministry to be a part of. This speaks to not only the ability of leadership to safely and securely support individuals with disabilities while at church, but also points out the necessity of the volunteer team to see the students in the ministry as valuable members of the community and Kingdom. This two-fold qualifier of know-how and ministry vision, well informed by God’s own perspective and example, is key to a well-rounded and honoring special needs ministry. Good communication and family partnership is another key component to a high caliber disability ministry. Ministry and church leaders who think about the message they are sending with website information, the parking lot arrangement, and even things like the preparedness of other ministry leaders and volunteers to direct new families to the right spaces in the church are paramount. I myself am still growing in this area of special needs ministry but continually am encouraged when families report feeling cared for in small ways that are not always apparent at first glance. If a church is willing to consider how they can partner with an entire family, regardless of the effort and resources it takes to do so, then people start to notice and communities begin to come together. A spiritual focus is needed. If a special needs ministry is great at communication, fantastic at providing safe and supportive spaces, holds numerous quality events and opportunities, but missed the mark on the spiritual focus of the ministry, then is it worth it? We ALL need to know that Jesus Christ died for our sins and by accepting Him as our Lord and Savior we can be

saved. There is no amount of ministry work, offerings, or dynamics that can overshadow that singular focus. This is true for our friends and students living with disabilities as well. A disability ministry should be helping its members learn, grow, and evolve in their own individual spiritual lives. Yes, there is a lot of gray areas when it comes to special needs ministry and its effectiveness in truly connecting every life to Christ. And no, we do not know if someone who is completely non-verbal or cognitively impaired is truly receiving and owning the messages and truths being presented to them. But I say, so what. God knows. Truth is truth and the scriptures themselves tell us that “by grace” we have been saved and that “this is not our own doing – it is the gift of God – not the result of works.” (Ephesians 2:8-9 NRSV). We can affirm that in His compassion and mercy, God will gather innocent people to Himself based upon the sacrifice of Christ for all sins. The words of God and the works of Jesus should be the foundation of every quality special needs ministry. This list is but a starting point for choosing or evaluating a special needs ministry. Other factors like dedicated spaces, adaptive equipment, weekday supports, congregational inclusion, passion, and service/leadership opportunities should also be considered. When it comes down to it, though, most people can tell if you care and if you are trying. If you find a church that sees the beauty in your child or loved one and makes a genuine effort to pass on to them the good news that we all enjoy about Christ, then you have struck gold. “Thank you,” Lord for all of the congregations out there in the world making an effort to include people of all abilities into their churches and faith communities. Amen. 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, John 3:16 and Ephesians 2:8-9 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.

June 2021 • Special Needs Living

apple cider donuts

Vegan Donuts

No Label At The Table Carmel

homer donuts

Ezra’s Enlightened Café Where To Get Your Gluten-Free Donut Fix on National Donut Day & After By Christina McGairk

Everyone looks forward to National Doughnut Day, which falls on the first Friday of June. According to the Salvation Army website, this tasty holiday was first celebrated in Chicago in 1938. Yet, the sweetly celebrated day reaches back as far as 1917. Two ladies known as the “Doughnut Lassies,” served coffee and doughnuts to American World War I soldiers who were fighting in France. Years later, the tradition is still being celebrated and most recently, those with gluten allergies or sensitivities can partake in the celebration, too. Gluten-free doughnuts can be found in a freezer section near you, but there are also local bakeries throughout the Indianapolis area that offer non-glutinous doughnuts. Here are a few to check out:

20 Special Needs Living • June 2021

This dedicated gluten-free bakery started out of the kitchen of mom and son duo Shelly Henley and Jacob Wittman. Jacob, who is on the autism spectrum, always wanted to be a chef. His mom, who was concerned about her son’s job prospects after turning 18, wanted to make sure he could earn a living doing something he loved. The actual storefront came into fruition in March 2018. Nestled in Carmel’s Arts and Design district this bakery has gluten-free and dairy-free bread, cookies, cupcakes, muffins, pies, and the list goes on. Although they won’t be participating on Doughnut Day, the bakery does dedicate the last Sunday of the month to donuts and cinnamon rolls, which must be preordered. Doughnut flavors include apple cider, vegan cinnamon sugar, and a gluten-free, dairy-free, and soy-free vanilla cake donut called the Homer Simpson. Ezra’s Enlightened Cafe Broad Ripple This dairy-free, gluten-free, non-GMO cafe opened in the epicenter of Broad Ripple Village in 2014. Owner Audrey Barron said one of the reasons why she started Ezras is because she wanted to offer parents a space where kids with special dietary needs could also enjoy. The cafe’s colorful and vibrant menu includes smoothies, healthy juices, granola and grain bowls, and healthy, yet delicious desserts. That list includes their mini doughnuts made out of organic ingredients like almonds, nuts, and dates, and come in three flavors – cinnamon, glazed, and chocolate. Donuts without the guilt. Who can beat that? Gluten-Free Creations Speedway Lydia Armstong, owner of Gluten-Free Creations, started baking gluten-free goodies out of her Speedway, IN, kitchen seven years ago. “I initially started to provide gluten-free desserts and other items to colleagues who had celiac disease or

gluten sensitivity,” said Armstrong. She herself started eating gluten-free about 10 years ago after she realized she was sensitive to gluten as well. Her business came into fruition because she noticed there weren’t many gluten-free bakeries around the Indianapolis area and she wanted to change that around. She offers cakes, cookies, bread, and cake doughnuts. You can currently find her doughnuts at the Fishers, White River State Park, Avon, and Statehouse Farmers Markets. The flavors she has available are chocolate or vanilla iced and vanilla cinnamon sugar with a minimum order of half a dozen. Jack’s Donuts Various Indiana Locations This well-known doughnut shop is celebrating its 60 years in business this year. Jack’s Donuts, which is spread throughout Indiana, was founded by Jack Marcum Sr. in 1961. The doughnut franchise is now owned by his grandson, Lee Marcum, and continues to offer sweet treats like tiger tails and applesauce donuts. Jack’s also offers a limited supply of gluten-free doughnuts in these three flavors – white, chocolate with sprinkles, and chocolate and chocolate chips. It’s best to call your preferred location ahead of time to see if they have gluten-free doughnuts available. Quack Daddy Donuts Pendleton and Westfield

Quack Daddy’s, which opened its Pendleton location in 2016 and its Westfield location in November 2020, is like a doughnut bar. Once customers walk in the door, they can customize their doughnuts to their liking by choosing the icing and topping they want. Quack Daddy’s gluten-free icing choices include white, chocolate, maple, and glaze. To top that off, customers can have their choice of gluten-free sandwich cookie (Oreo), Reese’s Pieces, Coconut, Chocolate chip, Fruity Pebbles, M&M’s, and rainbow sprinkles. According to owner Andy Arrendale, they use Katz Donuts for their supply, which is a well-known and highly rated gluten-free brand. The doughnut shop also has two separate prep areas; one for their gluten-free icing and toppings and one for their customers who have a nut allergy. These gluten-free doughnuts can be found in various supermarket freezer aisles: Katz: www.katzglutenfree.com Kinnikinnick: www.katzglutenfree.com DISCLAIMER: This column is for informational purposes only. If you have celiac disease or other allergens, please use caution. If need be, call the location, ask questions, and use your best judgment. If you would like to share Gluten-Free tips, tricks, info, etc. in an upcoming issue of Special Needs Living, email us at SpecialNeedsLivingIndy@n2pub.com.

Contact Kristin Richards Today!

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

Grace with her housemates at the Grandview home.

The Johnson Family

non-profit spotlight

Every day and every season were meticulously planned. Up at 5:30 a.m. to have Grace ready for the school bus. Make sure someone was home when Grace got out of school. Any extra-curricular activities meant allowing for exhausting preparation and time. Summers were especially challenging to make sure there was coverage for Grace’s special needs and therapies. The weeks were usually lined up with a multitude of day camps. At the same time, the Johnsons were sensitive to the fact that they had two other daughters that deserved attention, too: Grace’s twin sister, Josie, and their youngest daughter, Hadley. It was a house filled with infinite duties, activities, chaos, work, play, and love.

By: Kate Shepherd

All that changed when Grace’s counselor at North Central High School in Indianapolis recommended Grace consider transitioning to a group living setting. The Johnsons immediately thought of New Hope of Indiana.

Serves Up Independence Amy Johnson always thought she would dedicate her entire life to caring for her daughter, Grace, who was born with severe cerebral palsy. She knew Grace would not grow up like her twin and other siblings – learning and achieving independence as she aged. She could not care for herself – dress, bathe or feed herself. She was unable to walk, needed a wheelchair, and could not communicate well. Grace needed constant care. As a mom, Amy never allowed herself to imagine living any other way. Things other parents could justifiably take for granted, like extended vacations, dining out, spontaneous get-togethers, or even sleeping late were mostly out of the question. In fact, it would take some serious logistical planning just to be able to work late at the office.

22 Special Needs Living • June 2021

Tucked behind a fire station at W. 86th St. and Payne Road on the Northwest side of Indianapolis, New Hope was the first private residential facility for people with developmental disabilities in Indiana when it opened in 1978. It also became the first facility of its kind to choose in favor of community-based living. Today, it provides residential services throughout Central Indiana and a variety of therapy, day, vocational and transition services. New Hope serves more than 500 individuals with disabilities every year. After utilizing New Hope’s supports for several years, Amy knew that she could trust their services in this new chapter of Grace’s life. In February of 2018, the Johnsons toured the Grandview home, part of New Hope’s Supported Living Program. They found it very charming, clean, warm, and inviting. Despite persistent doubts, they moved Grace into the home in August of 2018, right when school was starting.

Meaning) program. AIM provides community-based services which give participants opportunities to plan and enjoy daily activities.

AIM participants learn skills for independence through volunteering, self-advocacy, and community participation.

Grace Johnson at her graduation from North Central High School in 2018.

Participants volunteer in the community, learn how to use public transportation independently, and practice other competencies that promote self-advocacy and independence; all while building social skills and lasting friendships with their peers. A highlight of the program is an annual trip to the Indiana Statehouse (except during the COVID-19 pandemic) to talk to lawmakers and state officials about New Hope and learn how the legislature works. The funds to launch the AIM program were raised during New Hope’s Annual Silver Cup Celebration in 2018. Mark your calendar for this year’s Silver Cup Celebration on September 30, 2021, at 11:30 a.m. at The Willows on Westfield to help support other programs. Cheese and Thank You

Amy Johnson and her daughter, Grace.

In its inaugural year, Cheese and Thank You’s crew members served up hundreds of lunches to customers throughout Indianapolis. The Food Truck Program promotes job readiness for young adults with disabilities.

“We decided on New Hope for Grace’s care sort of gradually,” said Amy. “New Hope set itself apart from other places because their staff was just very, very well trained; very responsible, respectable; dependable; showed up on time; showed love to our child; and so we considered New Hope sort of the cream of the crop.” Amy figured Grace would last a few days, maybe a couple of weeks at best. She anticipated Grace would not accept the new living arrangement and that it simply wouldn’t work out. But something unexpected happened at Grandview. Grace blossomed. “I feel like she is living her most independent life and she’s living her best life,” Amy said of now 23-year-old Grace. “Now it is her home, and this is her family – her extended family. She lives with three other women in this all-female home with round-the-clock staff, transportation, all the activities, at-home therapies, virtual therapies – staff helps with all that.” Amy doesn’t worry as much about her daughter these days. “The caregivers are amazing,” she said. “They’re just so loving and kind and gentle. They have way more patience than I ever had with Grace when she was at home. Grace is the happiest she’s ever been.” AIM Program For families in similar situations, New Hope of Indiana has led the way in creating meaningful transition services to promote independence after high school. One program that helps young adults with disabilities build independence is the AIM (Achieving Inclusion and

In 2019, New Hope launched the only food truck in the Midwest in which the food is prepared by, marketed, and served by young adults with intellectual and developmental disabilities. Although the truck is on hiatus because of the pandemic, it should be back on the road in 2022. Individuals who work on the truck learn more about the foodservice industry, social marketing, sales, customer service, and business practices. The program is designed for three to four clients to work on the truck for about a year. “This program is unique in that it trains young adults with intellectual and developmental disabilities in all aspects of the culinary industry,” said New Hope of Indiana CEO Allison Wharry. “They don’t just serve the food. They also learn how to prepare tasty dishes, market the truck, and help run a business. After working on the truck, they will have solid skills to take into the community and make a difference in the workplace.” The food truck features macaroni and cheese with toppings such as bacon, barbecue, buffalo chicken, and roasted veggies. Through AIM, Cheese and Thank You, residential services, and other programs, New Hope helps young adults transition from school and the family home into adulthood. For the Johnson family, that means that like Grace, they are enjoying some newfound freedom, while their daughter is thriving and loved at her new home. To learn more about New Hope of Indiana, to donate or to volunteer; visit www.newhopeofindiana.org. 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

June 2021 • Special Needs Living

School or ABA:

Top Seven Things to Consider by Angelica N. Gray, MA, BCBA, LBA

The decision to place your child in full-time ABA or in school can be a difficult decision for many families. Each child presents with a unique personality, areas of strengths, and goals to work toward. Classroom structures and teachers vary within the same school or across the same district and the educational setting can have pros and cons for each child’s unique educational needs. Many areas that are important to assess when making this decision may not seem as important and are often overlooked by more pressing and urgent considerations (problem behaviors, sensory seeking, stereotype behaviors). Below, I’ll offer an overview of the areas that you want to discuss with your child’s team when deciding their learning environment. 1. Problem Behavior is the most significant barrier to a child not

being able to learn and maintain placement in a public school setting. Behavior that impedes the learning of the child and of others is the first barrier to consider when discussing placement. If behaviors pose harm to the safety of the child and/or other children or adults (self-injurious behavior, aggressive behavior, property destruction, or elopement) ABA placement is recommended. ABA Therapy can help to determine the behavior function and develop a plan that can decrease problem behavior. As behavior severity and frequency decrease, the plan can be generalized to home and school settings. Schools often address problem behavior through conducting assessments and developing plans, but it is often difficult to adhere to those plans and intervene effectively due to classroom size, lack of crisis management training, or lack of individuals who are trained to assist in the school’s established crisis management protocols. Children who engage in maladaptive behaviors and are not a danger to themselves and can be easily redirected, have low frequency and low severity target behaviors, or who may need minimal supports with getting their needs met within the school environment, would be ideal for a school placement. 2. Schedule of Reinforcement. School placement would be recommended for children who are able to work independently for an average of 20 minutes intervals throughout the day without requiring a break (ie, reinforcement). Children who require more frequent breaks may need a 1:1 setting that an ABA placement could offer and allows for additional breaks.

24 Special Needs Living • June 2021

Schools often attempt to increase “time on task” for children, however, if there are no additional support staff to monitor, provide reinforcement, and systematically increase, these goals will often go unmet. Children who are able to work independently for an average of 20 minutes and are able to request for their needs to be met or have the ability to access needed reinforcement without adult intervention would perform well in a school environment. 3. Rate of skill acquisition. A child who can model or imitate the positive behaviors of peers, follow a teacher’s instructions within a group setting, and who can acquire skills without requiring a lot of repeated practice, would be recommended for school placement. The children we work with in our center sometimes require 200–500 opportunities to work on a skill before they become fluent in it. When a child is able to attend school but falls significantly behind classmates, it is a sign that more practice is needed with the material in order for them to know the material fluently. They often need more than a few examples and practice problems before they are able to complete the task independently. Some children may benefit from a split schedule of school and ABA in order to practice skills 1:1 and become fluent. 4. Requesting. One of the most common ignored barriers that

we see are children who do not make their needs known within the school setting. Examples of this are when a child doesn’t ask for help, clarification of assignments, or assistance when work is too hard. These students may not request bathroom breaks or let the teacher know if they are hot/cold, thirsty/hungry, in pain, or other needs. Additionally, they will not ask for the removal of aversive stimuli (ie, someone is bullying them, lights are too bright, etc.). In these instances, a partial or half-day ABA placement would be recommended in order to teach the child self-advocacy skills so that they can become more successful in requesting help to meet their academic and social needs within the educational setting and to reduce the likelihood that they will become victims of bullying. A second issue that is seen with the lack of requesting is that it can be closely tied to high-severity and high-frequency problem behaviors. When a child does not request, an ABA program can be beneficial in establishing a mode of communication for non-vocal children to begin communicating using single words either through the use of sign language, vocalization, pictures, or a speech communication device. Children who are assertive and will request (using phrases or full sentences) what they need and want as well as their likes and dislikes will most likely benefit in a school placement. 5. Labeling. The ability to label items plays a critical role in

conversation and language arts (reading, writing, and comprehension) skills. Children with a fluent foundation in labeling (including naming the parts of items, categorizing and naming the function of items will have a stronger foundation to build on

for reading, reading comprehension, and later writing composition activities. A child who can name and categorize hundreds of items (by features, functions, and class), as well as talk about them in their relation to other items, is more likely to succeed with activities and tasks that would be assigned within a school setting.

7. Daily Living Skills. Children who are not independent and fluent in completing daily living behaviors (toileting, eating, showering, etc.) would benefit from a comprehensive ABA program. Research shows that individuals who are not able to complete their own hygiene routines and require assistance are more susceptible to become victims of physical and/or sexual abuse. In our programs, we assess daily living skills with the goal of increasing independence in this area.

6. Social. Parents should definitely consider how their child

is interacting with peers when considering school placement. Some children may have a desire to make friends, but not know the steps to do so, while other children may be socially withdrawn and have no interest in their peers. Social skills are an important area to consider because children with poorer social skills may be singled out for bullying or experience depression or frustration when they are not able to make friends. Although ABA Therapy is 1:1, our center promotes the development of social skills by having group activities and games where children are initially assisted by technicians to participate within those settings and the technicians fade out as the child becomes more successful with social interactions.

We recommend school placement when children are able to independently toilet and eat without needing 1:1 adult assistance.

Children who can navigate the complexities of social situations and have the ability to make friends, participate in reciprocal communication, and shared interests would benefit from attending school.

To learn more about The Indiana Institute for Behavior Analysis and our services, please visit our website at www.tiiba.org or give us a call in Indianapolis at 317-388-8131 or in Evansville at 812-636-1533.

This list is in no way a complete list, and we recognize that each child (and their educational supports) will vary. This list was created from what our clinical team has experienced to be some of the most salient barriers when assessing school readiness. We encourage all families to have open discussions with all members of your child’s treatment team about the areas identified here as you navigate your child’s readiness for school.

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June 2021 • Special Needs Living

Brad and Matt

sponsor of the month By Patti Carroll

JEFF CARROLL GROUP ENCORE SOTHEBYS INTERNATIONAL REALTY

THE

Finding the “right” home for a client with a disability requires planning, research, time, diplomacy, and a little extra HEART. Did you know that currently there are no licensing or designations available to real estate agents who desire to work with special needs buyers or sellers? This underrepresented segment of the market is left on its own to figure out a very complex and potentially stressful process. Our mission at the Jeff Carroll Group is to help every individual and/or family achieve the dream of homeownership. We truly love what we do, and we believe that by working with an “all heart” perspective, we can change the world one client at a time. We strive to understand our ever-changing markets, and prioritizing our clients’ needs and interests is at the heart of what we do. Our journey began 28 years ago when our son was born and diagnosed on the autism spectrum. Life with a child on the spectrum can be filled with uncertainty, heartache, fear, hope, faith, and most of all overwhelming JOY! With every challenge we encountered, we took a deep breath and carefully worked toward a solution. We dedicated every spare minute to learning and understanding everything we could about autism. It took several years to realize that with every “lemon” we encountered, we somehow artfully learned to turn those “lemons” into amazing lemonade! It’s very similar in real estate as well! There isn’t a playbook for agents to follow. Our playbook at JCG has been developed over the past 38 years. We have a unique perspective into what families like “us” need in a home. Our clients are confident in the

26 Special Needs Living • June 2021

knowledge that they are working with agents that can successfully help them through the real estate process, no matter what the situation may be. Working with disabled clients has also allowed us to become more thorough as agents. We think much more about all of the little things while working side by side with those clients whose requirements might be truly unique. Our vision is to make this process as easy and joyful for them as possible. We believe this philosophy parallels the journey of parenting through special needs. real estate for those that are disabled is so much more than just the house structure itself, it’s the community that makes that house a home. We are longtime residents of the Hamilton County area and blessed with five amazing children, two grandchildren, and two incredible dogs that complete our family! Our children have always been our oxygen and the driving force in our passion to help and serve others. We have immersed ourselves in every aspect of family and community life, serving on multiple administrative committees, including PTO president and long-time members of the School Board Advisory Committee. This experience of family and community has blessed us with a unique understanding of the challenges facing those with special needs. With this unique understanding, compassion, and expertise, we would be honored to assist you in finding the home best equipped for you. If you are considering the sale or purchase of a home, or would just like to sit down and learn more about the process, please connect with us at www.jeffcarrollgroup.com!

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June 2021 • Special Needs Living

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28 Special Needs Living • June 2021

HIGHLIGHTING ALL SPECIAL NEEDS BUSINESSES 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). Do you have a story to share? Open your camera and hold it over this code, click the link that appears and you will be taken to the page to view some of the story options.

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June 2021 • Special Needs Living

Meet the

Johnson Family ERIC, JULIE, COLE, & GAVIN By Rae Swift Photos by: Colette Jackson

Julie and Eric Johnson have identical twin 13-year-old boys, Cole and Gavin. Gavin is neurotypical and attends Brownsburg West Middle School. Cole has cerebral palsy and attends the Jackson Center for Conductive Education, located in Mooresville. Originally from Owensboro, KY, and Stevens Point, WI, respectively, Eric and Julie faced a big challenge when it came to finding a school for Cole to attend that would meet all of his needs. They wanted an excellent education for their son as well as a program that could address his physical needs. While Eric has worked for 22 years at Lids as the vice president of retail, Julie is a trained

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library media specialist. However, she decided to stay home with the boys after their birth. She currently puts about 100 miles on her car a day just from driving Cole to school.

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30 Special Needs Living • June 2021

Cole has been a student at the Jackson Center for 10 years. Cole receives occupational therapy, physical therapy, and conductive education in the morning. In the afternoon, he does academic work. Julie and Eric are happy to have found a place for him to get all of his needs met under one roof. Julie is even on the board of directors. The family fundraises for the school every year, including attending their golf outing and gala night fundraisers. As for the twins? They love Disney World and traveling to Florida. Julie’s parents reside there. They enjoy swimming, going boating, and taking walks. They like Marvel movies and eating spaghetti and meatballs. Cole is involved with the Motor Activity Clinic at IUPUI. He gets paired up with two college students enrolled in an adaptive physical education course. He goes swimming and participates in adaptive sports in the gym. Unfortunately, doing things as a whole family is quite difficult for the Johnsons. Simple activities such as sledding or hiking require a lot of prior planning. When they fly, they have to bring along a big, bulky special-needs car seat onto the plane while they hope that nothing happens to Cole’s wheelchair in cargo.

While their lives have difficulties, Eric and Julie’s advice is not to settle. If your particular situation for your child is not working, keep looking. Network with other parents – Julie typically finds that they have all the information. Keep searching and don’t give up. One of the best things to come out of their unique situation is Cole’s relationship with a neighbor, Caroline Thomson. Caroline, 8 years older than the boys, started coming over when her older sister was there to babysit. Cole and Caroline have become very close friends. Caroline has even decided to become an occupational therapy assistant because of their special relationship. She currently works at the Jackson Center. 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.

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Matt, Noah, Hannah, Kelly Volk

pioneer parents in indiana

Noah’s bed example

By Angela Arlington

About Matt Volk and Noah’s World

Matt and Kelly Volk were working full-time in sales and marketing when their son was born in May of 2003. From birth, their son Noah did not sleep during the night for his first 5 months, and then he slept a little bit at a time. “He spent most of his waking hours crying,” Matt said. “We spent a lot of time in the middle of the night circling I-465 because driving was the only way we could get him to sleep!” Noah faced challenges from birth, but his diagnosis of autism was a bit of a shock. Noah’s sister, Hannah, was 4 years older and reached all her milestones on time. “We knew something was wrong when he was not hitting his benchmarks. After a battery of tests that all came out negative, he was diagnosed with autism at 20 months,” Matt said. Dealing with Noah’s sleep issues and diagnosis of autism made working full-time difficult for Matt and Kelly. Noah starting crawling out of his crib every night. By age 3, he was running around the house with no fear or concept of danger. Matt’s neighbor, Chris Stupp, became his sounding board for his concerns about Noah’s nighttime habits. Chris made furniture and custom woodwork, so he thought of customizing a bed for Noah. Matt smiles fondly at the memory. “He drew up the initial design as a solution to our problem for keeping Noah safe at night. The first bed for Noah was made in 2006. Chris made the initial frame and we found a boat cover manufacturer on the east side of Indy to sew the exterior. It literally changed our lives! Noah loved the bed – he felt enclosed and

32 Special Needs Living • June 2021

Example of Noah’s bed

safe. He did not sleep better but it gave him a safe place to play at night when he was awake. That gave Kelly and me the confidence to get a decent night’s sleep!” In 2007 a family facing similar sleep issues with their autistic child saw Noah’s bed and wanted one. “Chris and I knew then that we had an opportunity to help other families who had children with special needs,” Matt recalled. “We filed for and received U.S. Patent U.S. D554,871 S and Noah’s World became incorporated as a business on March 8, 2008.” Chris and Matt officially launched the business at the 2008 Autism Society of America (ASA) Conference where they displayed the bed. One of their first customers was the marketing director of the ASA and the mother of an autistic child. From the beginning, Matt had tremendous feedback on the bed. “At the time we developed the bed, there was nothing out there like ours. We felt a great sense of satisfaction helping families and children like Noah stay safe. Noah loved his bed and was a great “tester” for our product. We added a top to the bed shortly after he climbed out of it a few years later. Also, we have since

from the start. I still handle the sales and marketing and families can speak directly to me. Chris continues to custom-make each bed to order. “Our beds have long been known for their durability and design,” Matt added. “Our thought from the beginning was to create a bed that does NOT look like a hospital bed but a nice custom piece of furniture while providing that safety and peace for your child at night. I feel we accomplished that.” Matt and Chris Stupp – Co-founders

Noah and sister Hannah

strengthened both the frame and the exterior and added extra padding and access options.” The biggest challenge was navigating the world of insurance/Medicaid funding for the beds. Chris and Matt started the business out of Chris’s garage and funded it out of our own pockets. It took a few years, but now Matt has figured out all the logistics.

Noah’s World continues to grow. Close to a thousand families have bought beds. “We currently partner with dozens of durable medical equipment companies throughout the U.S., including the nation’s largest, NuMotion, to make our beds available to families,” Matt said. “At this point, I cannot imagine Kelly’s, mine, or Noah’s life without our bed. It has kept Noah safe, giving Kelly and me peace of mind that we would have not had without it! Noah is now 17 and just recently transitioned out of his bed. We still thank Chris for that initial design 14 years ago!” For more information, please visit:

So how is the Noah’s World bed different from other beds? How has Noah’s World evolved over the years? Matt says there are now multiple beds available to families to keep their children safe at night. “We feel proud to be pioneers in this industry and stay focused on our core ideals. While there have been multiple iterations of the bed, we now offer some options that were not available initially. We still make the same high-quality bed we have

Noah’s World LLC – Beds that keep children safe www.noahsworldllc.com 317.409.2566 matt@noahsworldllc.com 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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Father’s Day

SHOUT OUTS Quincy, senior in high school, big brother to Brock & Brody, “forever their keeper.. Quincy helps get them in the car every day for school, he sat at bedside when Brody was in the hospital, he gives a “fist bump” everyday on the way out of the door and ALWAYS makes sure he says goodnight”

Ray Baker – A Champion and A Voice for others “I want to submit Ray Baker for a shout-out. Ray is an extremely devoted father and grandfather. He has a son with autism and two grandsons with Down syndrome. Ray tirelessly volunteers with the Washington Township Special Olympics Team and went as far as creating a bocce ball court in his yard for the athletes to practice on. He is always at the Summer Games to cheer on all the athletes. Ray is involved in organizations to help raise funds for Special Olympics and other groups. He has sat on boards of organizations that support individuals with special needs and has worked alongside his son to support him at his job and in volunteer opportunities. Family is so important to Ray and they are lucky to have such a devoted man in their lives.”

The Peterson Family, back in 2005 “ Donald Craig Peterson has done a fantastic job with his kids who are now adults. He’s very involved with Special Olympics in addition to advocating for Fetal Alcohol Syndrome and Mental Health Awareness”- Patty

Jaxon and his “dad” Robbie “Robbie stepped in when my son Jaxson’s dad wasn’t there. He’s been here for the last five years, through long nights, long days, and even surgeries, even though he has no previous experience with children. He’s literally a saint and the most patient man I’ve ever met, especially with a kiddo like Jax. I could really go on and on about how patient this man is. He is at our weekly home therapy sessions (music and behavior consultation) and he will volunteer to do things when he knows he doesn’t need to. He even created an Android version of LAMP for Jax to use at home when we had no other device for him to communicate with. He really does go above and beyond for this child.” – Kala Newell

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Ryan, role model to Brock 7 years and Brody 8 years, “he does not see their disability… he sees them for who they are and loves them like his own!”

“My husband Matthew is an amazing dad. He takes the last tube feed of the day so I can have a break, schedules physical therapy into his work schedule every week, helps our daughter, who has CP, walk around the house so she can be a dinosaur, carries her on hikes, to the beach, and up sand dunes so she can have the same fun as everyone else, and he takes care of her tube feeding while we are on road trips. He makes the difficult possible”- Susan

Curtis, single dad to little Curtis 6 years and Annistyn, 8 years, “he juggles the fulltime demands of Autism, work.. kids.. and he does it well! Both his littles are happy and healthy kiddos. Curtis is always smiling and loves what he does! He says he does it because they’re his little minis and he would never leave them hanging… Curtis is such a role model for all gentlemen” -Lisa

Kala, Jax and Robbie

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36 Special Needs Living • June 2021

siblings perspective By Erin Boaz

SELL SISTERS

MEET THE

Nora, Jessica & Emily Meet the Sell Sisters: Nora, Jessica, and Emily. Nora is 16 years old and in 10th grade at Noblesville High School. Jessica is 20 years old and a college freshman at Same As U. Emily is 22 years old and a senior at Samford University.

Nora is excited to share her perspective about her sister, Jessica. I hope you enjoy this as much as I did! How has being a sibling to Jessica inspired or impacted you?

With Jessica as my sister, she has brought spunk to my life and makes my world a whole lot brighter and more interesting. It has helped me to become very patient and understanding, not only with Jess but every person I have an interaction with. What advice do you have for other siblings who have a special needs brother or sister?

Learn to love your sibling and all their quirks. Your sibling looks up to you, they think you are the coolest. Be that role model and just have fun with them. Support them and make sure their life is constantly filled with fun things. What are your favorite memories with Jess?

My favorite memories are from when she comes to watch my extra-curricular meets and show choir competitions. The fact that she’s there, seeing her smiling face, makes me feel like I have the best audience, no matter how many people are in the crowd. She stands out. What funny stories would you like to share?

So, I would start having a crush on someone or start spending more time with them, and then over time, the relationship would end. Jessica would randomly say their name and add “well, I would be hanging out with my current boyfriend!” A daily routine in our house is dinner. Jessica has a schedule. Monday: pasta. Tuesday: tacos. Wednesday: Rice Bowl. Thursday: depends. Friday: pizza. Saturday: take out. She’s very consistent. She is also very unique in the way she takes her medicine – either in ketchup or pickle juice. But only on vacations. Also, everything in her room has its place, so if I would borrow something and not put it back she would know.

What are a few of the challenges you experience with having a sibling with special needs and how have you overcome these challenges?

A couple of challenges I experience with Jess are mainly pulling on mom too much while she is trying to talk to her friends and getting upset and stomping off. I get embarrassed. What I don’t understand is how Jessica functions mentally on a whole different level. She has no filter. What we are probably all thinking about, Jessica voices. Which can be funny sometimes, but also a little bit inappropriate. Although in these situations I remind myself to have empathy for her. I have no clue what’s she feeling and the best thing I can do is love her and be there for her. Sometimes I remove myself from the situation so I don’t get mad at her. How do you enjoy spending time and or what is your favorite thing to do with Jessica?

I love spending time with Jess. My favorite thing to do with her is to go downtown and hang out. We usually bring a board game, which is always Pictureka. We always go to Noble Coffee, a local coffee shop. Jess orders by herself and sometimes orders for me. We usually have a blast playing the game together and she always beats me. I don’t even let her beat me! Ha, ha! In what ways do you admire Jessica? What makes her special and how has she motivated you?

I admire her growth because I love seeing her mature, grow and learn. She’s trying harder every day and it shows. Yes, she has her good days and her bad days, but Jessica is consistently trying her best. Jessica is special because she seems to have boundaries when it comes to talking to strangers – she doesn’t seem as open. But at home, she is usually a chatterbox. She has motivated me to become more organized and have a schedule. Jessica thrives under a schedule. She also motivates me to be myself. 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.

June 2021 • Special Needs Living

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to a text they received, we will stop sharing the story until they are done. If the breakdown keeps happening, we will likely become annoyed and potentially give up.

If you teach eye contact and speech, will an individual with ASD be able to effectively and meaningfully communicate?

We feel this way because 93% of communication is nonverbal and only 7% verbal. Our language is to enhance and clarify the conversation that is happening nonverbally. (It is also why we love emojis – the text is not adequate!)

Nearly every parent attempting to discipline their child has uttered the words, “Look at me when I am talking to you!” Our brains tell us that when someone is not looking at us while we are communicating, they cannot be listening and we are not “on the same page”. For example, when we are telling a story and someone picks up their phone to respond

So to truly communicate with another person, one has to shift their gaze toward their reference point, read and hear the other person’s facial expression, gestures, body position and prosodic changes in voice and then interpret what it all means in relation to what they are saying. You respond back and forth this way, repairing breakdowns and

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“eye contact” synonymously with Joint Attention, but it is only an element of it. Eye contact makes the receiving person assume you are jointly attending: listening, processing and understanding the shared information. However, trained eye contract can create looking without those latter skills. Instead, due to challenges in receptive and expressive nonverbal communication, individuals with ASD end up missing prosodic cues of disinterest in topic from peers, missing facial cues of confusion from partners to provide clarification, lacking context for the topic of conversation, not taking the perspective of their partner or not identifying sarcasm. The result is failed attempts and stressful exchanges. Avoid eye contact, avoid conversation, avoid feelings of failure.

misunderstandings throughout the exchange. It is a trifecta of Joint Attention, Social Communication and Social Cognition occurring at the simultaneously. For individuals with ASD, all three areas are significantly impacted, creating a developmental domino effect on communication. As a result, eye contact does not occur naturally. Shifting your gaze becomes meaningless if a nonverbal gesture is not useful to you. Why would you need to shift to look at another person’s facial expression if you don’t understand what it means anyway?

There is hope. With a qualified clinician, you can focus treatment goals on social-emotional reciprocity and nonverbal communication for the development of genuine, meaningful Joint Attention, Social Communication and Social Cognition skills. It is important to ensure that goals do not merely train eye contact or speech without context and meaning. Communication goals that focus on the trio of deficits are essential for anyone on the spectrum to build confidence and competence in relationships - you can socially communicate without language present, but you can also have language and not be communicating socially.

It is no wonder that individuals with ASD report that eye contact increases their anxiety. We tend to use the term

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Special Needs Living June 2021 Digital Issue

Articles inside

About Matt Volk and Noah’s World

Hope, Communication & ASD

Siblings Perspective - Meet the Sell Sisters - Nora, Jessica & Emily

Father's Day - Shout Outs

Pioneer Parents in Indiana - About Matt Volk & Noah's World

This Magazine is FOR YOU - BY YOU

sponsor of the month - The Jeff Carroll Group

School or ABA: Top Seven Things to Consider

non-profit spotlight - New Hope of Indiana Serves up Independence

Where to Get your Gluten - Free Donut Fix on National Donut Day & After

What to Look for In a Quality SN/Disability Ministry

June Local Events

The ABCs of IEPs

Dunklau Family - Diane, Caroline, Kiersten & Bridget

Smith MEET THE Family-Sharon’s Web Autism Foundation

Sponsor Index

Meet the Johnson Family - Eric, Julie, Cole & Gavin