Special Needs Living September 2021 Digital Issue

living

Special Needs

September 2021

Indianapolis & Surrounding Areas

SAVE THE DATE: SPECIAL NEEDS LIVING FALL SOCIAL AT GIGI’S PLAYHOUSE OCTOBER 23RD 1-4PM INSIDE: • Meet Joyce Fields & her inspiration behind Chea Clothing • Outdoor Sensory Parks, Places & Spaces • Meet Mitch Bonar • A Moment of Inspiration - There is no right way for caregiving parents to feel • Meet the Peterson Family - Raising Teenage Brothers on the Spectrum • Living with Duchenne • Non profit spotlight: First Steps • Sponsor Spotlight: John Cole Insurance Agency • Pioneer Parents: Meet Linda Hankins • Pastor’s Corner: Adulthood, Now What?

• Gluten Free Pumpkin Spice Goodies • Local Events and More

ON THE COVER:

Joyce Fields founder of Chea Clothing & Son Taurean Photos by Heather Gregg - 21 Vines Photography

CONNECTING - INSPIRING - EDUCATING - FAMILIES WITH SPECIAL NEEDS

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2 Special Needs Living • September 2021

More than a Trampoline Park Adrenaline is the perfect place for an adventure!

Have a blast jumping on trampolines (of course), channeling your inner ninja warrior, making it to the top of the climbing wall, or challenging your friends in jousting.

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and MORE!!

Sensory Friendly Play every Monday from 11:00 a.m. - 4:00 p.m. Call or email to reserve your spot!

10080 E 121st St Suite 182 Fishers, Indiana 46037 317-572-2999 adrenalinefishers1.com events@adrenalinefishers.com September 2021 • Special Needs Living

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I N D Y C B D P L U S . C O M

Needs Living September 2021 4 Special locally owned and •operated | Monday-Friday: 10AM-6PM | Saturday: 10AM-5PM | Sunday: 12pm-5pm

I M P O RTA N T

N UMBE R S 317-977-2375

Arc of Indiana www.arcind.org

317-257-8683

ASK: About Special Kids, Inc. www.aboutspecialkids.org

317-676-4222

Autism Community Connection www.autismcc-in.org

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)

800-545-7763

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

www.n2pub.com Turning Neighborhoods Into Communities © 2021 Neighborhood Networks Publishing, Inc.

AREA DIRECTOR PUBLISHER

Jamie McCabe jamie.mccabe@n2pub.com

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)

812-855-6508

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

317-233-1325

Indiana State Department of Health

844-446-7452

Indiana Statewide Independent Living Council (INSILC)

855-641-8382

Indiana Works

800-332-4433

INSOURCE http://insource.org/

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 https://eastersealscrossroads.org

911 844-323-4636

Social Security Disability Insurance (SSDI)

877-851-4106

Special Education Questions

317-871-4032

United Cerebral Palsy Association of Greater Indiana

800-545-7763

Vocational Rehabilitation Services (VR)

Emergency Family Voices Indiana www.fvindiana.org

800-545-7763

First Steps

574-234-7101

INSOURCE www.insource.org

317-232-0570

1-800-772-1213

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

SCAN TO VIEW THE PAST ISSUES OF SPECIAL NEEDS LIVING

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.

September 2021 • Special Needs Living

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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. If you run a business and would like to be involved or support this magazine you can set up a time to talk here https://calendly.com/jamie-mccabe/special-needs-living ABA & COMPREHENSIVE SERVICES K1ds Count Therapy (317) 520-4748 ABA SERVICES Adapt for Life ABA (317) 383-0188 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 ACCOUNTING/PAYROLL/TAXES Borshoff Consulting LLC. Sherry Borshoff (317) 902-6539 ADULT DAY CENTER Adult Day Centers Jay Lugosch (317) 296-8815 ADVOCACY/EVALUATIONS PEAS for Kids (920) 980-1172 ASSISTANCE DOG Indiana Canine Assistant Network, INC. (ICAN) (317) 250-6450

6 Special Needs Living • September 2021

ATTORNEY-WILLS/TRUSTS/ ESTATE PLANNING Law Office of Elizabeth A. Homes LLC (317) 660-5004 CASE MANAGEMENT Connections Case Management (317) 440-0637 IPMG - Indiana Professional Management Group (866) 672-4764 IPMG - Indiana Professional Management Group (866) 672-4764 CAT CARE & SITTING Bastet Cat Care & Sitting (317) 919-1948 CBD SUPPLIER Indy CBD Plus (317) 961-0191

FUNCTIONAL MEDICINE Wholestic Nutrition (317) 429-0111 GYMNASTICS Body by GymRoots Studio (317) 579-9300 HEALTH & WELLNESS LifeVantage - Team Richards Kristin Richards (317) 698-5264 INDOOR TRAMPOLINE PARK Adrenaline Family Adventure Park (317) 572-2999 adrenalinefishers1.com INSURANCE State Farm John Cole (317) 430-1958

COFFEE ROASTER Tinker Coffee Co. (317) 438-5728

INVESTMENT MANAGEMENT Dan Claxton Investment Advisory & Broker Dan Claxton (317) 250-8080

DAY / BEHAVIORAL SERVICES Developmental Disabilities Systems INC. - DDSI (317) 477-8240

LANDSCAPING/LAWN CARE/ LANDSCAPE LIGHTING Franco Landscaping, Inc (317) 858-3858

DENTAL CARE Children’s Dental Center (317) 842-8453

MOBILITY / ACCESSIBILITY CYA Mobility (317) 530-2541

FINANCIAL Munder Financial James Munder (317) 238-6621

MORTGAGE CrossCountry Mortgage (317) 666-4679

WestPoint Financial Group Gordon Homes (317) 567-2005

NEUROFEEDBACK THERAPY Indy Neurofeedback (317) 888-8500

ORTHODONTICS Hallmark Orthodontics (317) 773-5515 Rigsbee Hall Orthodontics (317) 574-0612 PEDIATRIC THERAPY Wee Speak (765) 446-8300 REAL ESTATE Encore Sotheby’s Patti & Jeff Carroll (317) 809-5839

REGENERATIVE MEDICINE/STEM CELL THERAPY Destination ReGen (317) 522-1980 REMODELING/CONSTRUCTION Ray’s Construction LLC Ray Valverde (317) 515-5308

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

SCHOOL Dynamic Minds Academy (317) 578-0410 SCHOOL - SPECIAL NEEDS The Fortune Academy (317) 377-0544

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

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

The ALTRUIST Group, LLC (317) 547-3041 x1005 THERAPY & TESTING SERVICES The Brain Center (317) 748-0034

Putnam County Comprehensive Services, Inspire Case Management, and Connections Case Management present our

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F o od · L ec t u r es · In t er a ctive Activitie s · Ve nd o rs · R af f les Questions? info@connections-in.com · https://fb.me/e/YTNnJwGA

September 2021 • Special Needs Living

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MEET THE Special Needs Living JAMIE MCCABE Publisher & Area Director

BRITTANY LOWE Event Executive

MARIA SMIETANA Editor & Writer

HEATHER GREGG Photographer 21 Vines Photography

CHRISTINA MCGAIRK Editor and Writer

LEAH PARKS Knightingale + Willow Photography

PEAS for Kids

TEAM WRITER & CONTRIBUTORS

ANGELICA N. GRAY, MA, BCBA

PAUL HATHCOAT

ERIN BOAZ

CARLA MILLER

LISA MONGE

AARON OLSON

SHANNAN PENAFLOR

LAURA SPIEGEL

SHEILA WOLFE

DEANDRA YATES

MAUREEN MARSH

REBECCA WOOD

ZACH ELLIOTT

MATT KNIGHT

PEAS for Kids specializes in educational consultation, advocacy, and customized assessment plans for children (grades PK-12+).

Assessment plans address emotional concerns and learning disabilities such as Dyslexia, as well as characteristics of Autism Spectrum Disorder and Attention Deficit Hyperactivity Disorder (ADHD).

PEAS for Kids strives to utilize the results of our evaluations to provide recommendations for, and work with parents in advocating for their child's educational needs within the school setting.

Psycho-educational Evaluations and Advocacy Solutions (PEAS) for Kids

Allison M Charette, Ed.S. Nationally Certified School Psychologist Founder, PEAS for Kids (920) 980-1172 • www.peas4kids.com allison@peas4kids.com

8 Special Needs Living • September 2021

upcoming event!!

Special Needs Living Fall Socia

l

at GiGi’s Playhouse UPCOMING EVENT!!

Special Needs Living Fall Social at GiGi’s Playhouse SATURDAY, OCTOBER 23RD 1-4PM

Come out and connect with other local special needs families. There will be entertainment, activities, prize giveaways, and a chance to meet some of the Special Needs Living families and supporters.

Link to register or scan QR code https://www.eventbrite.com/e/special-needs-living-fallsocial-at-gigis-playhouse-tickets-164038303983

SCAN ME

September 2021 • Special Needs Living

9

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10 Special Needs Living • September 2021

This Magazine is

– F O R YOU – BY YOU –

To Support & Connect You HER E IS H O W YOU C AN BE INV OLVED UPCOMING EVENT!!

Special Needs Living Fall Social at GiGi’s Playhouse

Saturday, October 23rd 1-4pm Come out and connect with other local special needs families. There will be entertainment, activities, prize giveaways, and a chance to meet some of the Special Needs Living families and supporters.

Link to register https://www.eventbrite.com/e/special-needs-livingfall-social-at-gigis-playhouse-tickets-164038303983

New option to receive Special Needs Living digitally through text message: Would you like to receive the digital version of Special Needs Living magazine through text message monthly? Just text the letters SNL to 55433

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.

Let’s Get Social

To keep up to date with all things happening with Special Needs Living – Upcoming Events/Socials/Gatherings – Stories and Highlights – Ways to be Involved – Follow us on Facebook@specialneedslivingmagazine.

FOR ADVERTISING:

Do you run a business that supports the special needs community and are looking to advertise in Special Needs Living magazine?

Email: Jamie.McCabe@n2pub.com. or to learn more click here http://bit.ly/SNLConnect

Have a story to share

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

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).

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.

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.

Scan to receive the digital version of Special Needs Living Magazine through Text Message Monthly

September 2021 • Special Needs Living

11

By Paul Hathcoat

meet

Mitch

Bonar

Have you ever met someone who is so obviously different in all of the right ways that you are simultaneously nervous to be around them but also feel compelled to stay in their proximity and learn more about what makes them, well, them? We have all experienced this phenomenon, which may or may not have a name but can be felt and distinguished from other events and people in our lives. In the context of this article, I call it “Meeting Mitch.” Let’s get to know this young man in order to uncover why meeting him was such an eye-opening experience for me, just as it has been for so many others.

Mitch Bonar is currently a 24-year-old college senior attending Indiana Wesleyan University, pursuing a degree in community development, with a focus on global ministry. That is impressive in itself, even before we get to know the struggles and challenges that Mitch has overcome to get to where he is today. His story begins like so many others in the disability community, with a series of diagnoses that point toward a lifetime of challenges and setbacks aimed at derailing what could be an exemplary and choice-based existence.

Mitch was diagnosed with cerebral palsy as a young child and found everyday tasks such as tying his shoes, walking with balance, and anything to do with eye-hand coordination a real test.

Mitch saw a speech therapist early in his school years to address the speech and hearing issues that made it difficult for him to learn and interact with the world. At 16, Mitch was diagnosed with mitochondrial dysfunction, which is characterized by symptoms such as muscle weakness, vision/hearing problems, learning disabilities, delays in development, and often, a lack of energy at a cellular level, which puts him at risk for muscle and heart ailments as well.

Top that off with a diagnosis of autism at the age of 18 and Mitch had every right to be a lifelong victim of his conditions. But Mitch had different plans for his impact on the world and God’s Kingdom.

Despite his disabilities, Mitch has not only survived but thrived, and impacted his community. In school, Mitch, like many students who are different from the mainstream, struggled.

He struggled to fit in, he struggled to fend off bullies, and he struggled to find extracurricular activities that matched his desires and talents and connected him to his peers. Thankfully, Noblesville High School and local churches and organizations had options for Mitch. He became involved in unified sports, played basketball in the Special Olympics, joined a sports league at White River Christian Church, and began to develop a sense of belonging and community. Mitch says that through these sports competitions and relationships he was able to show others that “I’m like you and you’re like me.”

In these high school and early college years, Mitch developed his leadership and public speaking skills as an advocate for inclusion and Christ-centered mindsets. He was asked to speak at his high school graduation ceremony and chose to use that opportunity to relay the importance of inclusion and accepting people for who they are, no matter their perceived differences.

After that speech, one of Mitch’s former bullies messaged him

12 Special Needs Living • September 2021

and said “Mitch, I want to tell you how proud I am of you. I am so thankful that you are in my life and everyone can see who you really are.” Mitch got the chance to take his inclusion message on the road and serve as the Grand Marshall of the 2018 Indy 500. Mitch said, “honestly, I think sharing my story was the best part of the whole day.” In 2019, Mitch was asked to attend the Special Olympics World Games in Abu Dhabi, UAE, and represent team America as one of two athlete representatives on the board of directors. Mitch focused that service time on “relaying the importance of inclusion and what that could lead to in each community.” He told me that his goal was to “make real connections with people – both teammates and competitive adversaries – to impact their lives and help convince them to use this experience to impact others in their own communities.”

Spending just a little bit of time with Mitch is impactful. Yes, he is a normal young adult and college student in many ways. He likes serving as manager of the IWU football team, playing video games, and sleeping in late. But Mitch has a drive and a passion when engaged that makes an impression and influences you to want to be a better person.

Mitch has been helped along the way, like most of us, by the good friends and family around him.

Mitch’s dad, Doug, and mom, Kelly, have instilled in him a genuine sense of self-worth and acceptance that Mitch says is best characterized by their continued message to him that “you are a gift to all of us in the family.” Mitch has two sisters, Victoria and Bethany, who have both learned how to support and be a part of Mitch’s life and aspirations. They all find solace in retreating to a lake house in Northern Indiana each year and eating their dad’s homegrown hot sauce that is reported to be so hot that his mom, Kelly, thinks “none of them have any taste buds.” This family, together, has built a life for Mitch that many young people living with disabilities do not get the chance to experience.

Meeting Mitch is an experience. Hearing his story is astounding. Seeing and feeling his passion for his family, his friends, his goals to impact the world, and mostly his passion to be a Christian is humbling. Mitch stands as a success story in the disability world. Not because of all of his accomplishments and fancy opportunities, but because of the message he brings and delivers through them. Mitch wants everyone to have a chance to experience the love of Christ and live the life that they choose. As a country and looking more closely into each of our communities, we still have a long road ahead of us before people of all abilities are truly seen and valued according to the strength of their virtues and the content of their character.

Let Mitch’s story be an example of just that. I thank you, Bonar family, for allowing all of our readers to “Meet Mitch!”

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.

Save the Date!

Wine & Wags Thursday, October 7, 2021 5:30 to 8 pm The Biltwell Event Center Indianapolis ICAN’s largest fundraising event, Wine & Wags, is an after-work program filled with testimonies from clients, handlers in prison, released handlers, and the powerful impact our service dogs make on people’s lives. There is no cost to attend, but you must pre-register. To learn more, contact brynnee@icandog.org.

Interested in hosting a table of eight or becoming a sponsor? Contact dino@icandog.org September 2021 • Special Needs Living

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Peterson M E E T

T H E

F A M I L Y

R A I S I N G O N

T E E N A G E B R O T H E R S T H E S P E C T R U M AMBER AND KEVIN PETERSON ARE THE PARENTS OF TWO BOYS, 15-YEAR-OLD PATRICK AND 13-YEAR-OLD EVAN. THE FAMILY HAS 7 DOGS. BOTH BOYS WERE DIAGNOSED AT THE AGE OF 2 WITH AUTISM SPECTRUM DISORDER. EVAN WAS ALSO DIAGNOSED WITH ADHD AT AGE 5. “WE ARE IN A LOT OF WAYS LIKE EVERY OTHER FAMILY, JUST TRYING TO MAKE IT THROUGH LIFE AND MAKE SURE EVERYONE IS SAFE AND FEELS LOVED AND APPRECIATED FOR WHO THEY ARE AND

Amber, Patrick, Kevin and Evan

THE ACCOMPLISHMENTS THEY ACHIEVE,” AMBER SAID. ONE OF THE HARDEST OBSTACLES FOR HER AND HER HUSBAND HAS BEEN GETTING ON THE SAME PAGE WHEN IT COMES TO RAISING THEIR KIDS. Evan sometimes becomes aggressive and overwhelmed with intense emotion. He is sensitive to a lot of sounds and typically wears headphones that help to block out noise even when sleeping. While he is verbal, he is incredibly shy and timid outside of the home.

Evan and Patrick

Patrick, on the other hand, has to be engaged and often prompted in order to fully use his speech skills. Amber says he thinks it is hilarious to yell curse words around the house. He currently enjoys starting the washer and watching it spin. Before, he enjoyed turning the thermostat on and off to hear the click. Patrick likes being outside and often does things he is not allowed to, such as playing with lighters.

Patrick, Amber and Evan

14 Special Needs Living • September 2021

Evan

Patrick, Kevin and Evan

Patrick

Patrick and Evan

Kevin, Amber ,Evan and Patrick

Both boys like YouTube. Evan makes his own videos (he’s up to 361 subscribers!) and Patrick acts out and recites the entirety of the videos he watches. The boys also enjoy swimming, going to the movies, and eating at Burger King.

Amber said that both boys had previously had many issues with meltdowns, resulting in aggression and destruction of property. But they have come a long way. They now each take care of their respective belongings, like their iPhone and iPad. And like typical teenagers, they don’t want much to do with their parents right now.

The reason Amber is so transparent about her life is because “I want to share a little about our complex family, so everyone can better understand why I want to advocate and help others. Through my knowledge, personal experience, and education, I have the skills and understanding to help loved ones who have children and family members with special needs,” she said. “I am trying to overcome a lot of the same situations as other [special-needs] families. This includes the intense overwhelming lottery of emotions that comes along with individuals who have special needs.”

In short, Amber would like others to view her and her family as a resource. She feels like she is meant to share their journey with other families. “Autism has brought us joy and pain, but we wouldn’t have it any other way,” she said. “I could just use more sleep.”

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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15

the inspiration behind chea clothing

By DeAndra Dycus | Photos by Heather Gregg 21 Vines Photography

Meet Joyce Fields I DIDN’T KNOW MY OWN STRENGTH In 1990 Joyce Fields found out that she would be giving birth to twins. Joyce felt pure excitement and joy in knowing that her family would be growing beyond what she expected. This wife and mother of one was ready to embrace her new bundles of joy and all that life was about to bring her.

Unexpectedly, Joyce gave birth to her twin boys two months early. Tilas and Taurean were born on March 28, 1990. There was so much uncertainty around having twins early, but Joyce knew very early on that she would have a fight on her hands, especially after receiving the news that Tilas’s heart stopped during delivery, and it appeared that he was having grand mal seizures while still in the womb. Joyce was told her son would not live past the age of 2. Only 25, and already raising one child, Joyce felt a bit overwhelmed but knew that it was her faith and her boys against the entire world.

Tilas’s health would be touch and go over the next 18 years. Joyce relocated from her hometown of Elkhart, IN, to Indianapolis in search of better medical care for her baby boy. It did not take long for her to realize that her baby was sent home to die. Heartbroken by the thought that the healthcare system treated her son and his medical needs differently because of his race, this mother knew she had to be her son’s greatest advocate.

Joyce shared with me how several hospital systems ignored the size of her son and the discoloration in his skin. At 12 months, Tilas weighed only 11.5 lbs! According to healthychildren.org, the average weight for a 12-month-old boy is 21 lbs. How could this be ignored?

Taurean and Tilas Taylor

Tilas Taylor

16 Special Needs Living • September 2021

As a mother of two black boys, I began to tear up listening to Joyce talk about the medical disparities that she and her children faced in the early ‘90s.

One hospital system even accused her of neglecting her boys and threatened to report her to authorities. It was not until they ordered medical records that they realized that Joyce was telling the truth; her cries for help and more

adequate care were simply ignored. Joyce reported to one hospital system that she was performing CPR 3-4 times a day just to keep her son alive and that often he looked discolored, but no home oxygen would be given until nearly a year later.

Life was tough, but Joyce never gave up. Her marriage soon was over. After an extensive hospital stay with Tilas, her older son, who was 3 at the time the twins were born, stated that he hated her because of the time she spent caring for not only Tilas but also Taurean, who was born with a heart murmur.

Grevin Fields (34 years old), Joyce Fields and Taurean Taylor (30 years old)

Joyce Fields, Taurean and Tilas Taylor, Grevin Fields

Few realize the sacrifice that a parent has to make when they are raising a child with special needs. It not only takes a physical toll but an emotional one as well. Joyce knew she loved her son Grevin as much as the twins. But she also understood his pain, as he often spent more time with his grandparents and aunts than he did with her due to Tilas’s lengthy hospital stays.

Tilas required full-time care. Joyce was unable to work or attend college while raising him. She had nursing support but that was not always dependable. Joyce stated she enjoyed the peace that came with being there for her son. Tilas had a trach, feeding tube, and shunt placed, and was on a ventilator. Getting out and being social like other women her age did not happen often. Although she had the support of her family, she recognized the fear that family members felt when they were in charge of his care. That meant free time for herself was very minimal. She stated that she slept maybe 12 hours a week, as she was the full-time caretaker after her son’s nurses ended their shift. Around-the-clock nursing care did not come until years into their journey.

Joyce and her family rarely were able to travel when her children were smaller due to Tilas’s complications. However, they would often drive back to her hometown of Elkhart to visit with friends and family. They enjoyed holidays and BBQ’s together and would root for the Indianapolis Colts. The whole family also loved going to the park.

Tilas’s favorite movie was The Mummy. He loved it so much that if he heard it playing in his sleep, he would wake up to watch it. Joyce’s favorite movie is Pursuit of Happiness because it gives her a reflection of who you can become and the knowledge that your dreams are worth fighting for, no matter the obstacles set before you. She truly believes that Tilas obtained that dream. He was a happy kid and his happiness warmed her heart more than most would ever know.

Joyce showed the strength and grace that so many parental caretakers have, but it is rarely shown to the world. Before I ended our conversation I thanked her for that strength, and we even shed some tears. It’s a beautiful thing when you can connect to women who share a similar pain. It’s so important that we have an ear from others to hear things that most people cannot begin to understand. After pressing end on my phone, I turned to my husband and said “she is my new hero.”

There is so much uncertainty that comes with raising a child with special needs, from the costs and availability of care to being able to balance life with everyone else who is depending on you. Very early on into her journey of being a special needs mom, her marriage dissolved, leaving Joyce and her 3 boys to embark into this new territory alone. Joyce did not give in to the temptation of giving up.

Instead, she simply kept going, becoming everything that her children needed her to be. No one walks this walk with perfection, and if we are honest, we sometimes wonder what giving up looks like.

But like so many others, Joyce took that option off the table, and she excelled. She shared with me how her faith in God truly carried and still carries her through.

In 2008, Tilas went into cardiac arrest at home. Joyce took him to Riley Hospital where his heart started and stopped one last time. Joyce painfully decided to let her beloved son go after family and friends came to say a final goodbye. The doctors had declared him brain dead.

In honor of her son and his fight for life, Joyce founded Chea Clothing LLC in 2001 (https://cheaclothing.net) and the Chea Smiles Foundation, Inc., shortly before Tilas passed. Under her nonprofit, Joyce hosts wheelchair van car washes and fashion shows for children with special needs. Tilas was able to attend both before his passing and this made Joyce one proud mother.

I’ll add that she is One Tough Mother!

Joyce Fields and Taurean Taylor (son 30 yrs old)

When you see us, don’t stare, say a prayer, or just keep walking. Don’t wonder how sad we are; we are just as happy as you are. Our journeys may appear to be different, and quite frankly they are, but the one thing that is our common denominator is the love we have for our children. We are all momma and papa bears standing ready to do the next big thing for the best thing that has ever happen to us and that is being a parent.

Chea Clothing

Joyce Fields

Joyce Fields and Taurean Taylor( son 30 yrs old) 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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impact supporters

Thank you to the below Impact Supporters for helping to support Special Needs Living Magazine

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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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By Sheila Wolfe IEP Services

THE ABCs OF IEPs

It is a new school year! YAY? How about changing some bad habits from the past and getting organized this year. Are you sick and tired of wasting your precious time trying to find specific forms, information, dates, doctor records, not to mention IEPs, evaluations…? The list is endless. This year is going to be different! This year you are going to have everything at your fingertips. Just think, it might save you enough time to take a shower every day.

Keeping track of the records and documents generated while caring for a child with special needs is overwhelming. At least once a year, there is a Case Conference and a new IEP. There are at least four progress reports that go along with that IEP, and sometimes countless emails between the parents and the school. Throw in a dose of private therapy, doctor visits, medication changes,

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20 Special Needs Living • September 2021

evaluations, and, if you are lucky, records regarding your child’s Medicaid Waiver, and you have a huge mess on your hands.

It is critical that parents maintain detailed, organized records for their child with special needs. As I have mentioned in previous articles, if there is ever a dispute between parents and the school, these records are the “proof” needed when pursuing your administrative remedies. Since a due process filing can only include issues that have occurred within the last two years, I recommend keeping extremely detailed records for a two-year period. Once the records are over two years old, you may decide to delete or discard them. However, I advise keeping ALL evaluations regardless of the date they were completed.

Step one: get some three-ring binders and a three-hole punch. I find it easiest to keep records in a tabbed binder in chronological order. How you organize your binders is your choice, but I have some suggestions.

Step two: tab your binders. Each school year should be in a separate binder. I suggest including a dated tab for 1) each IEP (including a copy of the dated meeting notice); 2) progress reports (including data to support the progress); 3) evaluations (including the signed consent form and written records of any request for evaluation); 4) emails (in chronological order with the subject highlighted); 5) doctor/ medication records; 6) therapy records; 7) behavioral records (this might include copies of Behavior Intervention Plans from the school or an ABA therapist, discipline referrals from the school, suspension records, etc.); 8) any additional records that pertain to your child’s disability or needs.

Step three: create reminders in your smartphone or calendar.

It is important to file important documents and records when you receive them, but it is also important to make sure you are getting the documentation promised in the IEP. Put a reminder in your phone of the “report card” dates for your school system.

A child with special needs is to receive a progress report at least as frequently as the typical students do. Check your IEP for the frequency of progress reports and make sure you receive meaningful progress reports when due. If the school has promised to do progress monitoring assessments every month for reading comprehension, for example, set up a reminder in your phone to

ask for the results if the school has not provided a copy. Comb through the IEP for all details regarding deadlines or dates for services, reports, evaluations, etc. Each of these should be on your calendar with a reminder set up. If you don’t receive the required documentation from the school when due, send an email requesting the missing information. Please remember to always communicate in writing with your school so you have a record of the date and content of any request.

Step four: evaluate the information received. The principal reason parents need to stay organized and diligent about the implementation of the IEP is to assure their child with special needs is making meaningful progress on a timely basis. Do not wait until April of next year to start complaining to the school that your child is not progressing in reading, math, language, or any other area of need. Create your own graphs detailing the results of all progress monitoring assessments. If you don’t see an upward trend in the data after 3-4 assessments, write an email to your teacher of record noting your concerns. If there is still no upward trend by the first progress report, ask to convene the Case Conference Committee to look at options for improving the rate of progress for your child.

Keeping your student’s educational records organized and easy to access will save you time and aggravation throughout the school year while improving your ability to monitor and hold the school accountable for meaningful progress. That is everyone’s goal for a great school year!

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YOUR CHILD DESERVES TO REACH HIS FULLEST POTENTIAL AND BECOME A VALUABLE PART OF HIS COMMUNITY

Looking for physical, occupational, or speech therapy for kids? Choose a family-friendly therapy center that makes parent education a priority.

According to the Center for Disease Control, 15% of children between ages 3 and 17 have encountered some form of a developmental delay.

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Donate.

Volunteer.

Engage.

Partner.

In 2019, the U.S. Department of Labor Statistics reported that only 19.3 percent of persons with a disability were employed.

Starkly contrasting that number, the employment-population ratio for persons without a disability was 66.3 percent. As the economy has been further impacted by the COVID-19 crisis, the employment opportunities of many individuals with a disability have been put in jeopardy. Building Essential Skills Together, Inc. stands poised to make a difference by providing meaningful skill-development and employment opportunities for teenagers and adults of all abilities.

By: Seth M. Nunan, PhD Manger, Building Essential Skills Together, Inc.

What We Do Skill-development workshops ● Participants engage in activities designed to improve independence and vocational preparedness. Focal points include following directions, solving problems, performing tasks to completion, and communicating needs. Individuals also learn skills to support career development such as appropriate dress and hygiene, managing finances, and job field specific abilities.

Volunteer Opportunities ● Occasionally, employment is not the right path for those we serve. So, we seek to develop volunteer opportunities on par with our supported employment experiences. Our teens and young adults can still gain valuable transferable vocational and social skills volunteering with B.E.S.T. Burgers & Fries, More Than Mops, and Building Essential Skills Together as part of the broader mission to positively impact families and communities.

Supported Employment ● With B.E.S.T. Burgers & Fries, team members learn skills in food preparation, money handling, and customer engagement while operating the food truck at community events. ● Through business to business partnerships, our team with More Than Mops participates in indoor and outdoor cleaning and maintenance projects.

They develop skills in the use of hand and power tools, carrying out floor plan setup, detail-oriented cleaning, and more!

How to Support the Mission ● ● ● ●

HOST our food truck at your business or event HIRE our cleaning & maintenance services for your business SPONSOR and/or participate in one of our fundraising events.

DONATE ○ buildingessentialskills.org/donate ○ Venmo @BESTsnacks ○ Facebook @buildingessentialskills ○ Product donations (Amazon Smile)

The Next B.E.S.T. Way to Get Involved!

On Thursday, August 12, we will be hosting our first in-person fundraising event at the Country Club of Indianapolis.

Whether you are always in the rough or on par to be the next club pro, we look forward to having you join us as a player or a sponsor at the first annual B.E.S.T. Golf Outing!

The day will be a full one from registration until the last putt is sunk. With food, drinks, contests, prizes, and a great game of golf, all hosted by your Building Essential Skills Together team, your involvement significantly impacts the lives of an Visit buildingessentialskills.org or contact us at serve@buildingesesntialskills.org to register your team or to engage as an event sponsor! We cannot wait to see you on the links!

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22 Special Needs Living • September 2021

www.buildingessentialskills.org Facebook @buildingessentialskills Email to serve@buildingessentialskills.org Phone at 317-520-4748

Adulthood, N O W W H AT ?

If you find your special-needs child recently finishing school or

By Paul Hathcoat finally reaching their adulthood, the road ahead can be cloudy and unfamiliar. What does their future hold? What options do they have? Can independence be the goal? These questions and so many more are facing many families in our communities. Let’s talk about some ways that you can empower your children toward advocating for themselves and still be a supportive pillar in their journey.

pastor’s corner

Transition to supporting their individual personalized goals:

(Luke 18:16- “Jesus said, ‘Let the children come to me, and do not hinder them, for it is to such as these that the kingdom of God belongs’”.)

You have been the one to advocate for your child since the beginning. You have set up the appointments and worked with the therapists and partnered with the schools and doctors to create plans for advancement into the future. Now, as with any parent, you may find much more success for everyone involved if you see yourself as an advisor instead of the boss. In simple terms, help your child find their own voice. Help them dream about their life ahead and in whatever way you can, let them lead toward it.

Find more, targeted services and supports that are available for your young adult.

(Romans 12:5- “so we, who are many, are one body in Christ, and individually we are members one of another.”)

Your community is your biggest ally. There are probably many more supports and services available than you know. At my church, White River Christian in Noblesville, for example, we have options for young adults to get to know their savior, connect with their peers, attend a college-like program, build employment skills and job expertise, and find value in volunteering and serving in their areas of giftedness. Go out and meet as many people as you can and talk to them about what opportunities they know of, what their children are doing now, and who else is looking to welcome people with disabilities into their businesses, programs, churches, and clubs in your community. The more trees you shake, the more fruit ends up at your feet.

success looks like for your child and the life they want to live. Be humble but fearless in learning from others.

Lastly, pray and seek the counsel of God.

(Jeremiah 29:11- “For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.”)

We can agree that God has a plan for your child and their life.

We may not understand initially, and we may never feel like we have fully uncovered those plans. Let me assure you though, that God wants to bless your child and use them to serve the people in your community and to bring His kingdom more glory! That, we can pray for. That, we can seek to get clarity with. In that process, we may also find the peace and strength to make it through these transitions with grace and even joy.

If there is anything we can do, don’t hesitate to reach out and ask us to join you on this journey. Blessings to you all on your journey to unlocking your child’s future!

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.

Seek those who have gone before you.

(Job 32:7- “Those who are older should speak, for wisdom comes with age.”)

Connect with those who have been through this phase of life with their children. Find out about strategies and methods that worked for families already. Are there social media groups and parent support groups in your area? Are there ministries and non-profits locally that include in their network those who have been through this phase of life?

Be transparent about your child’s capabilities and future goals and start asking for experienced peers to help you redefine what

Contact Kristin Richards Today!

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

23

sponsor of the month By: Maria Smietana

JOHN

COLE

INSURANCE AGENCY-

STATE FARM

24 Special Needs Living • September 2021

This year, John Cole will celebrate 15 years as an insurance agent with State Farm. The Anderson, IN, native graduated from Wabash College, and started working for State Farm in 2006. A year later, he opened his own agency in Pendleton. “I help people with their insurance and financial services needs but more importantly, I educate them on how to best protect their family and assets, so their financial future is secure,” he said. That’s especially important for families who have children with physical or developmental disabilities and need help with estate planning and funding of special needs trusts.

John understands special needs families very well; he grew up in one. His older brother Tom has exhibited traits of being on the higher-functioning end of the autism spectrum his entire life. “Almost everything I do was impacted somewhat by having Tom in my life,” John said. That includes his dedication to making the world a better place, one action at a time. “My staff and I try to give back to the community as much as possible. Every month, my agency donates money to a local cause based on how many new customers we add. In 2020, we gave over $10,000 to charity.”

Tom started participating in Madison County Special Olympics when he was 11 years old, according to John.

His sports are swimming and basketball. John started

volunteering with the organization as early as his middle school years. Several decades later, both brothers are still very involved in Special Olympics, although in different counties.

Tom lives in Hancock County and works for Shares, Inc. in Greenfield. The not-for-profit company employs individuals across a range of abilities to perform contract jobs for other companies, such as packaging, sorting, mailing, recycling, paper shredding, light manufacturing, and much more. “Tom has become the unofficial spokesman for Hancock County Special Olympics among his fellow employees,” John said. “It has made such a difference in his life.”

John, who has lived in Noblesville since 2011, has coached basketball and track and field for Hamilton County Special Olympics since 2007, and the impact on him has been just as significant.

“The athletes have helped me so much more than I have helped them,” he said. “They have taught me persistence, shown me what perfect teamwork looks like, and reminded me that we all work better when we work with others.”

Business Contact Information John Cole Insurance AgencyState Farm john@johndcole.com 765-778-2181 | 317-430-1958(cell) 7033 South State Rd. 67 Pendleton, IN 46064 September 2021 • Special Needs Living

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pioneer parents in indiana

About Linda Hankins

By Angela Arlington

In February of 1981, Linda Hankins gave birth to her son David. He was beautiful and adored by his family. “When he was diagnosed with Down syndrome it was a shock, and left us full of questions,” Linda recalled. “Even though my husband and I were both teachers and already had 2 kids, we had no training on how to raise a child with a disability.”

It was an overwhelming time for Linda. “We read everything we could get our hands on, made dozens of phone calls-- remember there was no internet at the time--and learned that we should start our son in physical and occupational therapy.” But where? Insurance would not cover services and the Hankinses could not take him to the hospital as an outpatient.

“There were no services in Hendricks County for infants with disabilities. It was so frustrating,” Linda said. “We kept calling as many places as we could and eventually were put in contact with other families raising children with Down syndrome. They did not have all the answers, but at least we knew we were not alone.”

Linda eventually reached the early childhood director at Noble Center (now Noble of Indiana) in Indianapolis. “After I explained our situation, he said the magic words-’We have an opening in our program and there is no waiting list. We will enroll your son.’” So on November 11, 1981, after nine months of seeking answers, David started therapy and early intervention services for 3 days a week. Linda had to handle transportation, but there were no charges for the services.

“What a Godsend for our family,” she recalled. “I cried as I left him that day, but I also felt relief that he was finally getting the therapies he needed.”

During that time, David was diagnosed with a congenital heart defect and had open-heart surgery when he was 2 ½ years old. While in the hospital, Linda met another family whose son had Down syndrome and was having heart surgery too.

26 Special Needs Living • September 2021

Then Linda discovered that they had the same pediatrician. “We had no idea the other family existed. I remember thinking this was not right, so I made a phone call right from the waiting room lounge, and gave the pediatrician an earful! From that time on, whenever a family of a child with Down syndrome came to him, he would give them my name and phone number to call if they wished. We connected with several families that way.”

David was at Noble Center for 3 years.

During that time, both he and Linda progressed through therapies and developed many friendships. “The early childhood director urged me to get involved with Indiana’s Task Force on Early Childhood Intervention that he chaired. The members of the task force were professionals from around the state that were meeting to propose mandating early intervention services for infants and toddlers with disabilities to the Indiana Legislature. It was just the opportunity that I was seeking.

I was determined that no more families should have to go through what we did to get services for their child.”

At the task force, she was introduced to Donna Olsen, who had 2 children with cystic fibrosis. That meeting led to Linda and Donna becoming lifelong friends and ultimately, the formation of Indiana Parent Information Network (IPIN.) “Every parent needed ready access to a phone number to call where they could talk to another parent about available community resources,” Linda said. “Our co-conspirators, Gary Collings, Director of Special Education for Washington Township, and Lana Thompson, a social worker for the Child Development Center at Riley Hospital, felt as strongly as we did that parents and professionals needed

one place to call to get answers about resources for families.”

The time from 1981-1987 was a blur of activity for Linda. “My husband and I were so busy, she said. “He continued teaching and started a lawn grading business to make extra money, since I had to quit my job. I was busy transporting David to doctor’s appointments and Noble Center, visiting legislators, and trying to keep a semblance of order at home. I found out years later that all my daughters remembered of that time was that I was never home--that was heartbreaking to learn.”

A member of the task force, who was a special education director from northern Indiana, took Linda to visit the State House for the first time. “It was a real eye-opener. From that time until the passage of the First Steps legislation in 1987, I was a regular visitor at the State House, talking to anyone who would listen about the importance of early intervention services for children with disabilities. On the day the First Steps legislation was enacted, David sat on Governor Evan Bayh’s lap as he signed the legislation into law.”

IPIN’s first “office” was in Donna’s basement. “The kitchen table was the conference room,” Donna laughed.

“It was great, we could fold clothes while we talked, and feed the kids as we worked.”

Linda was actively involved with IPIN/ ASK from 1987-2007. She served in many leadership roles on the board, including president and treasurer.

In 1988, Linda was hired by Riley Hospital for Children as the first parent liaison in the NICU, taking the IPIN model into the healthcare setting. As coordinator for the Preschool Assistance Project in Developmental Pediatrics at Riley Hospital, she created training materials and educational resources to support her efforts to assist school systems working with preschoolers with special needs.

She and others from Riley Hospital traveled throughout the state teaching school district personnel how to serve preschoolers with special needs. She also developed the Special Care Sitter program at Riley.

Linda completed her tenure at Riley Hospital as a member of the pediatric teaching faculty. In this position, she helped develop a rotation series focused on children with special healthcare needs and/or disabilities. That rotation is now a requirement for all pediatric and general medicine resident physicians. Linda also served as the legislative liaison for the hospital. In that role

she frequently traveled to Washington DC with the National Association of Children’s Hospitals to work on legislative issues concerning children with special healthcare needs.

She retired from Riley Hospital for Children in 2006.

Linda and Donna both received awards from the Indiana Chapter of the American Academy of Pediatrics for outstanding contributions to the welfare of Hoosier children in 1994. Linda also received the 2004 Glenn R Irwin Experience Excellence Award from Indiana UniversityPurdue University at Indianapolis. In 2006, she was awarded the Roberta West Nicholson Child Advocacy Award

from the Children’s Bureau of Indiana. In 2012, she received the Distinguished Leadership Award from The Indiana Governor’s Council for People with Disabilities.

After retirement, Linda shifted her advocacy efforts toward adults with disabilities to more closely follow the needs of her now-adult son, who had developed a very rare and severe form of obsessive-compulsive disorder called obsessional slowness. Her son lives with 2 roommates in the community.

He can no longer work because of the complexities of his OCD, but he volunteers for the Danville American Legion. Her daughters are now married and both have successful careers and families.

Linda currently serves on the Sycamore Services board of directors. She credits her ability to do all that she does to her husband, Hank, and her family.

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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Events provided by : Brittany Lowe Event Executive

s t n e v e local

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:

- 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

28

MUSEUMS

Sparkling Inspirations: A Nature Art Workshop with Visiting Artist Deonna Craig Every Friday: September 3rd & 4th 1:30-2:30pm Children’s Museum 3000 North Meridian Street Indianapolis, IN 46208 317-334-4000 https://www.childrensmuseum.org/visit/ calendar/event/77 Special Needs Living • September 2021

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.

SPORTS

Indianapolis Indians Games September 1-5, 14-19th Victory Field 501 West Maryland Street Indianapolis, IN 46225 317-269-3542 https://www.milb.com/indianapolis/ ballpark/faq

Indianapolis Colts vs Los Angeles Rams September 19th 1:00pm Lucas Oil Stadium 500 S. Capitol Avenue Indianapolis, IN 46225 317-262-8600 https://www.lucasoilstadium.com/event/ colts-vs-los-angeles-rams/

Indiana Fever vs. Phoenix Mercury September 4, 6, 12, & 17 Indiana Farmers Coliseum 1202 E. 38th St. Indianapolis, IN 46205 317-927-7623 https://www.indianastatefair.com/ events/2021/indiana-fever-v-phoenix

Dre’s 21st BDAY Celebration September 9/25 10-4pm 501 E. 32nd St. Indianapolis, IN 46218 www.purpose4mypain.org 7th annual 5 on 5 basketball tournament bringing awareness to gun violence as well as to the journey of those with special needs. We are looking for youth ages 13-17 to play. Team and event sponsors.

Vendors and individuals with special needs of all ages to participate in the fashion show.

THE ARTS Kroger Symphony on the Prairie Every Friday and Saturday: Aug 6-28 8pm

Conner Prairie 13400 Allisonville Rd. Fishers, IN 46038 317-639-4300 https://www.indianapolissymphony.org/ event/temptations/

Newsies August 19 – Oct. 3 Beef and Boards 9301 Michigan Rd. Indianapolis, IN 46268 317-872-9664 https://www.beefandboards.com/Online/ default.asp

CHIARI AWARENESS MONTH Conquer Chiari Walk Across America September 18th & 25th https://walk.conquerchiari.org/register

VIP Carnival sponsored by the Zionsville Lions Club and the HAWK Foundation Lions Club Park September 10th 4pm 11053 Sycamore St, Zionsville, In 46077

UPCOMING EVENT!!

Special Needs Living Fall Social at GiGi’s Playhouse Saturday October 23rd 1-4pm Come out and connect with other local Special Needs families. There will be entertainment, activities, fun, prize giveaways & get a chance to meet some of the Special Needs Living Families & Supporters.

Link to register https://www. eventbrite.com/e/ special-needsSpecial Needs Living Fall living-fall-social-atSocial at GiGi’s Playhouse gigis-playhouseSaturday October 23rd tickets-164038303983 1-4pm SCAN TO REGISTER

We are committed TO BUILDING BEAUTIFUL SMILES BY FOCUSING ON BEING PERSONABLE, POSITIVE, AND PROFESSIONAL! With special training in craniofacial, surgical, and special care orthodontics, the staff and team at Hallmark and Rigsbee Hall Orthodontics is committed to you!

We are excited to see your beautiful smile and have a lot of fun along the way. Call us for a free consultation.

Carmel & Shelbyville IN rigsbeeorthodontics.com 317-574-0612

Noblesville & Elwood IN hallmarkorthodontics.com 317-773-5515

September 2021 • Special Needs Living

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Tell us about your organization

First Steps is a family-centered early intervention program for infants and toddlers from birth to age three who may not be growing and learning appropriately for their age or who have a medical condition(s) that would likely lead to developmental delays. First Steps provides services such as speech, physical, occupational, and developmental therapy. We can also assist families with behavior issues, feeding and nutritional concerns, among many other things. Indiana First Steps is Indiana’s response to the Individuals with Disabilities Education Act (IDEA), Part C.

Logan

Logan and Miss Beth

How does your organization support those in the special needs community?

To support families in their natural caregiving roles, First Steps connects a family with a child who has been determined to be in need of therapy services with various therapists and other professionals to address the developmental delays of the child. These voluntary services are typically offered in the family’s home or other natural environment. Anyone can make a referral for an evaluation. Go to www.cibaby.org or call 317-257-2229.

How can others get involved or support the organization?

Through the Local Planning and Coordinating Council (LPCC, or “the Council”), you can ensure that the public is made aware of First Steps services, that families have the information they need, and that providers are supported.

The First Steps LPCC is a voluntary group composed of parents of children with special needs, representatives of organizations providing early intervention services in the Central Indiana region, and members of the community that want to assist with the implementation of First Steps locally.

Please help us make a difference in our community and in the lives of families receiving First Steps services by participating in planning provider meetings, training opportunities, family events, and more! Membership is open to everyone, and your input and assistance is greatly needed.

What difficulties and or challenges do you help families and individuals with special needs overcome?

Human learning and development are most rapid in the time from birth to age three. The earlier a family of a child diagnosed with a developmental delay can get help, the better the chance that child has of reaching his or her full potential. First Steps connects these families with health, education, and social service professionals. If children are determined to be eligible for services, fees would be based on a sliding scale. First Steps is available throughout the state. https://www.in.gov/ fssa/firststeps/first-steps-offices/first-steps-map/

30 Special Needs Living • September 2021

Logan and Miss Jane

Logan

Logan and Miss Amy

The following testimonials are from two families whose children benefitted from First Steps’ services. In addition, my daughter, who has Down syndrome, is now 27. She is doing well, thanks to the wonderful services she received from First Steps as a child.

Logan, age 2, was born premature and with a low birth

weight. He had prenatal drug, alcohol, and nicotine exposure from his birthmother and was diagnosed with spastic diplegia cerebral palsy, tethered cord syndrome, a neurogenic bladder, and a neurogenic bowel. He does not currently have any siblings, but his family is on the waitlist to adopt again. Logan received feeding, occupational, physical, and speech therapy through First Steps. His mother, Chelsea, states that “I am 100% confident that Logan would not be where he is today without the invaluable therapeutic interventions from our First Steps providers. “ Logan started out his life two months earlier than expected and spent significant time in the NICU. He was referred to First Steps by his pediatrician soon after he came home from the hospital. Logan was so very small and very fragile that even eating was a challenge for him. His reaching even the littlest of milestones was cause for a celebration in their household. His mom added, “Watching my little boy unclench his fingers and relax his hands brought tears to my eyes and I know it would have been that much more difficult and painful for him to do even the simplest of things without our First Steps team there to work with him to accomplish those tasks. Watching him roll over for the

non-profit spotlight An interview with Angela Touseull, Council Coordinator, First Steps LPCC

first time, hold his first toy, swallow his first bite of food, say his first word – all of that was because of the love and unwavering support and hard work from Miss Jane, Miss Amy, and Miss Beth. They are our special friends who hold a big place in our hearts. Thank you First Steps!”

Lance is 3 years old now but received services from

Lance

Lance and Miss Sarah

Lance

First Steps to help with gross motor, speech, and developmental delays. He has two siblings, ages 4 and 8. Lance received physical, occupational, speech, and developmental therapies through First Steps. His mother, Alexandra, said “First Steps has been a tremendous blessing to our family.

Our service coordinator and therapists have been phenomenal and have genuinely been like family.

First Steps has helped our son live his best life!”

Alexandra also stated that Lance’s therapists were an integral part of his classroom, openly communicating with staff and family members to ensure they were building a strong community around him. “We are forever grateful for the support and encouragement we received through First Steps.”

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

The Brain Center Comprehensive outpatient neuropsychological and psychological assessment services for children, adolescent, adult, and geriatric patients in whom impairments of cognitive or neuropsychiatric functioning are evident or suspected.

Lance and Miss Sarah

Psychotherapy for children, adolescents and adults.

Neuropsychological Testing Forensic/Legal Evaluations Psychotherapy & Caregiver Consults CogMed Training Animal-Assisted Therapy

317-748-0034 braincenteratgeist.com Lance and Miss Sarah

September 2021 • Special Needs Living

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By Christina McGairk

GLUTEN FREE

PUMPKIN/PUMPKIN SPICE

Fall is my absolute favorite time of the year. The leaves turn beautiful shades of red, orange, and gold. The temperature is neither too hot nor cold - it’s just right.

Yet, what I really love most of all about fall is that it’s PUMPKIN SPICE SEASON! I’ve been a diehard Pumpkinhead ever since I can remember. I’ve always enjoyed everything pumpkin. Pumpkin pie, pumpkin candles, pumpkin home decor, and of course, pumpkin spice lattes.

So imagine the excitement when I see pumpkin spice and pumpkin-flavored items hitting the store shelves. There are a lot of gluten-free pumpkin options as well. Here are some of my favorites.

KATZ PUMPKIN SPICE GLAZED DONUTS

These tasty morsels are sugar and pumpkin spice and everything nice all rolled up into a yummy breakfast treat.

Gluten-free flour is mixed with pumpkin puree, cinnamon, and nutmeg and will have you second-guessing if they are actually gluten free. These donuts are also dairy, grain, and soy-free. YAY! No fillers!

NATURE’S PATH ORGANIC GLUTEN-FREE PUMPKIN SPICE WAFFLES

What I love about these morning delights is that you don’t have to wait until fall to enjoy these ALA Omega-3 packed waffles. They can be found in grocery freezers all year round. And they are both gluten-free and vegan in addition to being organic!

32 Special Needs Living • September 2021

ANGIE’S BOOM CHICKA POP PUMPKIN-SPICE DRIZZLED KETTLE CORN

Yes, this perfect snack is as good as it sounds. When I first tried this delicious popcorn, the smell took me back to my childhood and the aroma of my Daddy’s freshly baked pumpkin pie coming from the kitchen.

He was quite the baker. So for this pumpkiny goodness to bring back warm memories makes it pretty special in my book.

CUCINA ANTICA@TUSCANY PUMPKIN PASTA SAUCE

Now hear me out before you turn up your nose.

Yes, I know pumpkin sauce on pasta may sound gross, but it’s actually really good. The secret is knowing what to pair it with. The creamy blend of San Marzano tomatoes, pumpkin, garlic, and a hint of cinnamon can add a touch of fall to cheesy tortellini or baked ravioli. It may be on the higher end pricewise, but this gluten-free pumpkin sauce doesn’t disappoint on the flavor.

HEALTH WARRIOR PUMPKIN SEED BARS

The other thing I enjoy besides pumpkin/ pumpkin spice flavors is the pumpkin seed itself. Not only are the seeds a good source of magnesium, iron, and zinc, but they are also full of antioxidants. These plant-proteinpacked bars come in an array of flavors--dark chocolate, dark chocolate coconut almond, dark chocolate peanut, and honey sea salt.

Made with organic pumpkin seeds, this portable snack is perfect for those who want a quick pick-me-up on the go.

What are your favorite gluten-free pumpkin favorites? ***Disclaimer: I’m not a nutritionist or a doctor. I’m just a loving Mama supporting her daughter and others through their gluten-free journey. If you have questions about a gluten-free diet or celiac disease, please contact your medical professional. Thank you.*** 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.

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TELEMEDICINE PRACTICE Join our Addressing Autism From Functional Medicine Perspective Program and understand the mind and body and spirit connection!

Gain the knowledge and expertise to help yourself and others achieve their optimum health!

Functional medicine is ideal for helping individuals with ASD as the body is viewed as one integrated system rather than a collection of independent organs. By understanding and treating the body as a whole, functional medicine can help various ranges of abnormalities such as gut imbalances and detoxification issues common in individuals with autism. Such abnormalities often cause the behavioral and mood symptoms of autism.

There is no reason you or your family should endure any additional stress. We understand autism comes with enough complications and trying times, and now settling for mediocrity does not have to be your future.

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Wondering If Wholestic Nutrition Is Right For You? Schedule a FREE Discovery Consultationwith a highly trained TELEHEALTH coach!

317-429-0111 | WholesticNutrition.com | 621 Fort Wayne Ave, Indianapolis, IN 46204

34 Special Needs Living • September 2021

L I V I N G

Alex, Christopher, Mindy

By Christina McGairk

W I T H

Duchenne Muscular Dystrophy

A Mother’s Perspective

Duchenne Muscular Dystrophy, also known as Duchenne or DMD for short, is a rare genetic disorder that is caused by a genetic mutation that stops the body from making a protein called dystrophin, which helps the muscles move properly.

If this protein is not present, muscle cells begin to weaken and become easily damaged. Over time, those with Duchenne lose their mobility and have trouble breathing. Unfortunately, as the disease progresses the respiratory and heart muscles eventually stop working. Life expectancy, although improving, is still not that long. Instead of a life expectancy reaching into the teens, with advancements in Duchenne treatment and research, some patients now live into their 30’s or 40’s.

According to the Muscular Dystrophy Association (MDA), DMD occurs in 1 in 3,500 to 5,000 males worldwide. Although males are primarily diagnosed with this disease because of the DMD gene falling on the X chromosome, females can be carriers and experience some Duchenne-type symptoms.

Mindy Cameron of Carmel, IN, had never heard of the disease until her son was diagnosed. Yet now, she’s making it her life’s mission to educate others and advocate for those living with Duchenne.

She has led awareness campaigns, raised funds for DMD research, worked with the Department of Defense Duchenne Muscular Dystrophy Research Program, and was involved in developing the Duchenne Family Assistance program.

Cameron even climbed Mount Everest with other families to raise funds for Duchenne research. She’s also on the Carmel Disability Council and a board member of the Muscular Dystrophy Family Foundation of Indiana.

She and her husband, Alex, knew something wasn’t right when they noticed their son Christopher wasn’t reaching his milestones.

“He wasn’t rolling over as an infant, he really didn’t get off the ground, and he still wasn’t speaking at 2 years old,” said Cameron.

The Camerons had Christopher’s ears and eyes checked, but it was his physical therapist that noticed he had signs of muscular dystrophy. He was diagnosed with Duchenne at just under 3 years old by a pediatric neurologist.

“I felt very shocked,” said Cameron. “The news was pretty hard to hear. I threw myself into advocacy, and now it’s such a huge part of my life.”

As the disease progressed, Christopher had trouble walking by age 8, and by the time he was 12, he was in a wheelchair. He has been taking a steroid to help his pulmonary function for the past 17 years.

Cameron, a mother of 2, had always hoped her son would be eligible for gene therapy, but unfortunately, his unusual mutation makes it highly unlikely. There are now clinical trials for Duchenne medications, but Christopher is too old to participate in those trials.

One of the hardest things Cameron had to face was finding out that she was actually a Duchenne carrier, which happened when Christopher was 7 or 8 years old. According to the MDA, females who are carriers of the disease can display symptoms such as muscle weakness and heart issues, both of which Cameron battles with.

Despite the hardships of the disease, including when Christopher fractured a bone at age 16 and flatlined in the hospital, the Camerons are trying their best to stay positive.

“We don’t want to dwell on the negative,” said Cameron. “Our family believes in just living the best you can; there’s always a way.”

Christopher, now 21, is a sophomore at Ball State University, where he majors in creative writing.

“He loves to write,” said Cameron.

“He’s already written a few screenplays and a tv series.”

To learn more about Duchenne, or get details on the Muscular Dystrophy Family Foundation benefit concert in September, visit www.mdff.org.

September 2021 • Special Needs Living

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OUTDOOR SENSORY PARKS, PLACES & SPACES

Near You

By Special Thanks to ASK - About Special Kids - for helping with this great resource list

Banker’s Life Fieldhouse Kulture City Sensory Friendly Certified pacersinsider@pacers.com 317-917-2500 125 S Pennsylvania St., Indianapolis, IN https://www.bankerslifefieldhouse.com Sensory-friendly bags (headphones, Fidgets, lap pads, badging) available at Guest Relations on Main Concourse between sections 19/20; Club level across from Suite 29; Balcony level across from sections 106/107; Sensory wall located in Section 13; Accessible Blue Heron Park 11780 Brooks School Road Fishers, IN play@franklin.in.gov 317-736-3689 https://www.franklin.in.gov/ egov/apps/map/viewer. egov?view=map;id=2 Expression swings, inclusive park, nature preserve, trails

Brooks School Park parks@fishers.in.us 317-595-3150 https://www.playfishers.com/Facilities/Facility/Details/ Brooks-School-Park-5 Sensory play area, learning trail, accessible playground Cardinal Park 3432 Hornaday Road, Brownsburg, IN parks@brownsburgparks.com 317-858-4172 https://brownsburgparks.com/ cardinal-park/ Sensory and inclusive playground (under construction April 2021)

36 Special Needs Living • September 2021

City Center Park 415 Lincoln Street, Greenwood, IN 317-881-4545 https://www.greenwood.in.gov/division/ blocks.php?structureid=39 Expression swings, county’s only splash pad, accessible playground

Clear Creek Park 1201 West Main Street, Richmond, IN parks.richmondindiana.gov 765-983-7275 https://www.richmondindiana.gov/location/ clear-creek-park Sensory panels, sensory-based equipment Connor Prairie 13400 Allisonville Road, Fishers, IN https://www.connerprairie.org/about/contact/ 317-776-6000 Sensory-friendly hours: 3rd Sunday of the month, 10-12 pm but may stay longer. Free admission, quiet spaces and all loud sounds silenced, quiet space boxes Everybody’s Playground- River Heritage Park 11813 River Road, Carmel, IN guestservices@carmelclayparks.com 317-848-7275 Accessible playground, children’s amphitheatre, soft surface trails Fishers Agripark @ Roy G Holland Memorial Park Kulture City Sensory Friendly Certified 11171 Florida Road, Fishers, IN parks@fishers.in.us 317-595-3150 http://www.playfishers.com/217/Fishers-AgriPark Sensory-friendly bags, quiet spaces

Fort Wayne Children’s Zoo Kulture City Sensory Friendly Certified 3411 Sherman Blvd, Fort Wayne, IN https://kidszoo.org/ 260-427-6800 Sensory-friendly bags (headphones, Fidgets, lanyard identifying sensory concerns) can be checked out in stroller rental station; quiet areas, sensory-friendly trained staff Freedom Trail Park 500 Deer Walk Trace, Westfield, IN guestservices@westfield.in.gov 317-804-3184 https://www.westfield.in.gov/egov/apps/ locations/facilities.egov?view=detail;id=67 Sensory garden, inclusive playground, sand table

Mulberry Fields 9645 Whitestown Road, Zionsville, IN 317-873-5410 http://www.zionsvillein.gov/Facilities/Facility/Details/ Mulberry-Fields-9 ADA accessible; splash pad Nickel Plate District AMP Pavillion Kulture City Sensory Friendly Certified 10 Municipal Drive, Fishers, IN parks@fishers.in.us 317-595-3150 http://www.playfishers.com/Facilities/Facility/Details/ The-Pavilion-at-the-NPD-AMP-25 ADA accessible water fountain that shoots and bubbles from the ground, fountain illuminates at night; sensory-friendly bags available; all events are sensory friendly

Friendship Corner at Matter Park 1803 North Quarry Road, Marion, IN 765-662-9931 https://cityofmarion.in.gov/government/ departments/parks-recreation/list-of-parks Sound, texture and fragrance play components; accessible playground, fully fenced

Holiday World and Splashin Safari 452 E. Christmas Blvd, Santa Clause, IN fun@holidayworld.com 1-877-463-2645 https://www.holidayworld.com Boarding passes for those with disabilities, ride accessibility guide, calming room for sensory-sensitive guests (reserve at Guest Relations) Independence Park 2100 South Morgantown Road, Greenwood, IN 812-526-6809 https://www.jocoparks.com/independence-park/ Sensory play area with over 20 different elements, YALP SONA arch, sensory-friendly music area, accessible playground Lucas Oil Stadium Kulture City Sensory Friendly Certified 500 S Capital Ave., Indianapolis, IN tour@icclos.com 317-262-8600 https://www.lucasoilstadium.com Sensory-friendly bags (headphones, lap pad, verbal cue cards, Fidgets, lanyard identifying sensory concerns) available at Guest Services kiosk behind section 121; designated quiet areas, sensory signage, accessible

Potawatomi Zoo Kulture City Sensory Friendly Certified 500 South Greenlawn Avenue South Bend, IN info@potawatomizoo.org 574-235-9800 https://www.potawatomizoo.org Sensory-friendly bags (headphones, Fidgets, lanyard identifying sensory concerns) can be checked out at the attraction booth by the carousel. Sensory signage around zoo, quiet areas, sensory-friendly trained staff Riverwood Spray Park 7201 N. Crittendon Avenue, Indianapolis, IN 317-327-4553 https://www.indy.gov/agency/ department-of-parksand-recreation Spray grounds, comfort station

Stephens Park 605 Stephen Drive, Brownsburg, IN parks@brownsburgparks.com 317-858-4172 https://brownsburgparks.com/stephens-park/ Accessible playground, trail encircling the park September 2021 • Special Needs Living

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Taylor’s Dream Boundless Playground (located inside Kreager Park) 7225 North River Road, Fort Wayne, IN 260-427-6000 http://www.fortwayneparks.org/general-information/stayconnected/talk-to-us-2.html http://www.fortwayneparks.org/facilities/boundlessplayground.html Multi-sensory themed play, variegated play space for different age groups, therapy play guides available online, Accessible playground

Victory Field Ball Park Kulture City Sensory Friendly Certified 501 West Maryland Street Indianapolis, IN indians@Indyindians.com 317-532-6928 https://www.milb.com/indianapolis Free sensory-friendly bags (headphones, Fidgets, weighted lap blanket, lanyard identifying sensory concerns); sensory wall in PNC Plaza, quiet rooms, sensory signage around park, accessible seating and restrooms

West Park 2700 West 116th Street, Carmel, IN guestservices@carmelclayparks.com 317-848-7275 https://www.carmelclayparks.com/parks/west-park Expression swings, water feature with rain simulation, runoff stream, trails, prairie maze, splash pad

Therapeutic Sensory Gym at Rhodius Park 1720 West Wilkins Street Family Center, Indianapolis, IN indyparks@indy.gov 317-327-7191 https://www.indy.gov/activity/find-a-park Sensory swings, ball pit, balance beam, ladder light, sensory activity wall, trampoline. Children 12 and under $3 per child

Westermeier Commons Park 920 Central Park Drive West, Carmel, IN guestservices@carmelclayparks.com 317-848-7275 https://www.carmelclayparks.com/parks/central-park/ Cave spaces for children needing quiet play, self-contained splash pad, accessible playground

38 Special Needs Living • September 2021

September 2021 • Special Needs Living

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

THERE IS NO RIGHT WAY FOR

Caregiving Parents to Feel Someone once said that “the only constant in life is change.” How fitting for a summer of unexpected news. A loved one of mine is ill, and I’m once again reminded that health is not to be taken for granted.

None of us knows what lies ahead, and our bodies are not infallible. They never professed themselves to be. It’s we, in our arrogance, our busyness, who simply forgot.

Many of us parents know this well. As we dream of our future families, the warm bundles of love that we’ll cradle in our arms, we don’t typically envision pressing medical needs. We pass the local children’s hospital in just that – passing – too busy navigating our playlist to give it a second thought.

We see fundraisers on late-night TV and videos of friends-of-friends on social media and experience a sharp intake of breath. Followed by the quick relief that it’s not us. Not our children. Not the loves of our lives.

UNTIL I T I S.

Eight years ago, I was entering my final trimester.

I was knee-deep in pink onesies and woke in the night paralyzed by the myriad of nursery color choices. Were the purple walls good enough, or should I give myself an extra kick and make that teal happen? My husband and I landed on a name. A beautiful, classic name that honored a beloved family member and was music to our ears. Our baby’s heartbeat was normal, her growth rate expected.

We joked how our second time around, nothing could throw us for a loop.

Five days after our daughter was born, the pediatrician alerted us to an abnormal blood test result.

Shortly after, our little girl was diagnosed with cystic fibrosis (CF).

WE. W E RE. TH ROWN. F O R. A. LO O P.

40 Special Needs Living • September 2021

Our daughter is a miracle. She tells the wildest stories, and when she laughs, her face opens up like the sky. She is a gentle friend and a sometimes hellraiser. She runs the soccer field like there’s no tomorrow, feeling bashful when she kicks the team’s first goal of the season. Before I’ve finished flipping the jigsaw pieces over, her puzzle’s almost finished. She dresses in my clothing, draws whiskers on her face, and pretends to be a high-heeled cat lady who teaches gym class. Class starts at 10 PM sharp, just after bedtime.

Science and medicine have progressed since our daughter was born. In June, the FDA approved a game-changing medication that has done wonders for adolescents and adults with CF. The day our daughter took her first pill was the third happiest day of my life. It marked the start of a new path in her healthcare journey. A hopeful path. One that marches toward the sun.

To all the moms and dads out there who are on a similar ride, know this.

There is no one right way to feel. Devotion, ferocity, protectiveness, uncertainty, fear, persistence, hope. All have a place on your journey, and it’s okay if your feelings are tangled up together or if they swing from one side of the universe to the next on any given day. Our bodies aren’t machines, and neither are our minds.

You are doing the best you can. Your heart swells with a love you never knew you could feel. You advocate with a strength you never knew you had. You hope beyond your wildest of dreams.

And that life you had envisioned once upon a time?

Sometimes, when you think of it, you’re sad. You grieve what’s not to be.

Sometimes, when you think of it, you laugh. What Pinterest world were you living in?

But mostly, when you think of it, you smile. For this life – this love – this gift — is sweeter than you’d ever imagined.

Warmly, Laura Spiegel Founder and President Paint Her in Color, LLC 317.362.3050 laura@paintherincolor.com www.paintherincolor.com

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.

Empowering Lives

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

41

HEART SOS Services for Individuals & Families

Hope, Love, & ASD: Building Skills for Life Want more confidence?

Mental Health Counseling can help you get unstuck.

What to go on a dinner date?

Occupational Therapy can help you dress to impress.

Want to advocate for yourself?

Speech Therapy can help you communicate your needs.

Want to try new things?

Behavior Consultation can help you become more flexible.

Heart of the Spectrum Outpatient Services

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Reach out today at asdheartsos.com 7739 E 88th Street Indianapolis 46256 1318 Ohio Street Terre Haute 47807 42 Special Needs Living • September 2021

Therapeutic Education for ASD Our mascot, the dragonfly, represents the mission of our model perfectly. The dragonfly symbolizes change, adaptability, self-realization, emotional depth, and lightness. Not only can it quickly adapt to it's environment and change it's course, it does so with confidence. We aspire to be like the dragonfly in our journeys of personal growth, even when it seems impossible. The dragonfly has so much strength; it can fly through a storm. Our mission is to help our clients and students with ASD gain knowledge that will build competence in social, academic, and vocational areas of their lives. With dynamic skills they can navigate any challenges they encounter with confidence, just like the dragonfly. -Julie Gordon

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Enroll today at dynamicmindsacademy.org September 2021 • Special Needs Living

43

Matt Savage

meet

44 Special Needs Living • September 2021

By Tasha Cleaver

International jazz pianist, composer, bandleader, and speaker Matt Savage is coming to play and speak in Westfield, IN, on September 12, 2021. His performance kicks off the “Rebuilding Carter’s Play Place” campaign with event organizers Carter’s Crew and LEL Home Services.

Matt vibes with the world by sharing his music and inspiring people by discussing his journey with autism spectrum disorder. He deeply connects with Carter’s vision of “Play Beyond Boundaries,” and says it is thrilling to help kick off their campaign to build a new facility after a temporary closure during the COVID-19 pandemic. The original building is no longer large enough to house their growing operations, so the new play place will open in spring 2022.

The event will take place at Chatham Hills Country Club, located in Westfield. Beautifully designed, the club will lend its accessibility and top-notch hospitality to the inclusiveness of the concert. The event will include a silent auction, a resource and vendor fair sponsored by Special Needs Living Magazine from 12:30 – 2:30 pm and a VIP reception from 2:00 – 3:00 pm. The show begins at 3:00 pm featuring local performers, with Matt and his band playing from 3:45 - 5:30 pm. The City of Westfield stated that “Westfield is a great place to live, work and play because we believe our community is built on how we support those we serve. Events are meant to be enjoyed by ALL, so we work hard to plan our events with compassion and a commitment to our community.”

LEL Home Services, a leading provider of Medicaid waiver services, purchased Carter’s Play Place in 2019 to continue to provide inclusive play for all in the community. After closing amidst the COVID-19 pandemic, Carmela Toler, LEL Chief Executive Officer, saw the growing need for a larger space to house Carter’s programs, which include recreational play, therapies (occupational, music, recreational), respite care, camps, classes, party rental space, and special events. Carmela said, “I hope to continue to learn from the people I serve and to ultimately leave behind a legacy of how we should value individuals with disabilities and that doing so is not that hard. That’s why Carter’s Play Place is essential. Everyone deserves the good things of life.”

The concert features Matt and his band playing jazz standards along with some of his original work and also includes a motivational presentation. “I will tell the story of my childhood as a musician on the autism spectrum and contrast that with a few tidbits about my current life as a touring pianist, composer, and educator,” he said. LEL and Carter’s Crew, the nonprofit foundation supporting play for all ability levels, feel it’s invaluable for Matt to share how unique challenges can be opportunities for great successes. Matt adds, “I’ll primarily be speaking about each transition to a new phase of my life and how music has influenced each new move and career change.”

Matt grew up in Sudbury, Massachusetts. At age three, he was diagnosed with pervasive developmental disorder, a diagnostic category which includes autism. He says he could not tolerate sounds, especially music, during his early childhood, so it was surprising that within a few years, he would grow into a musical genius. Early intervention and family support were paramount in his success as he spent the next years growing his skills. At age 6 ½, Matt began immersing himself in music, and thanks to his high intelligence, was flourishing at an astonishing pace. He remembers teaching himself to read music and play piano in a single night.

Recognized as a jazz prodigy at only eight years old, Matt had already shared a stage with some of the biggest names in jazz while most kids his age were just starting to pick up an instrument. Now, at age 29, after a 20-year career, Matt enjoys representing Bösendorfer and Yamaha and performing with musicians of all skill levels. He has appeared on television shows like “Late Night with Conan O’Brien,” “The Late Show with David Letterman,” “Today,” “20/20,” and the Discovery Channel, and shared a stage with Dave Brubeck, Chick Corea, Chaka Khan, and Wynton Marsalis, to name a few.

But Matt’s true joy comes from teaching others about jazz.

Besides touring the world tickling the 88 black and white keys on a piano, Matt currently teaches at Bunker Hill Community College in Boston and Saint Anselm College in Manchester, New Hampshire. He recently released Splash Variations, the 13th album from Savage Records, his music company. The album debuts the Matt Savage Groove Experiment, his new jazz fusion project with nine fellow musicians, and is available at www. savagerecords.com.

“I hope that the lesson people take away from this big event is that abilities and creative capabilities are always in flux - and that disability should never be seen as permanent,” Matt said. “We are always learning and growing as human beings.”

Support Matt and Carter’s Play Place as they kick off the campaign by going to www.ccrewindiana.org. You can purchase tickets for September 12 or make a contribution if you can’t attend in person. For questions, email tasha@ccrewindiana.org.

September 2021 • Special Needs Living

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46 Special Needs Living • September 2021

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