Special Needs Living Indy Nov 2023 Digital Issue by Uniquely You

NOVEMBER 2023

PHOTOS BY 21 VINES PHOTOGRAPHY

MEET

The Funk Family

November 2023

Every 3RD FRIDAY OF THE MONTH ALL PROFITS go to chosen charity of the month.

Jump. Climb. Get Active. Sensory Hours

Thursday's 6:00 p.m.- 8:00 p.m. Special accommodations taken during sensory hours. WAIVER FORM

PLEASE FILL OUT BEFORE JUMPING We love to throw Birthday Parties! TODDLER PLAY AREA • TRAMPOLINE PARK • ARCADE WARPED WALL • ZIP LINE • AND MORE...

10080 E 121st St Suite 182 • Fishers, Indiana 46037 317-572-2999 • www.adrenalinefishers.com Special Needs Living Indy

ISSUE PREVIEW

• Pages 44-46 Featured Family: Meet the Funk Family • Pages 48-49 Sponsor Spotlight: Ausome Indy • Pages 32-34 Making A Difference: Meet Dr. Mayor Hodges, Improving Accessibility One Act at a Time • Pages 16-18 Children With Disabilities Deserve Love and a Family Too: National Adoption Month • Pages 28-29 Nonprofit Spotlight: Epilepsy Foundation of Indiana • Page 13 Sensory Blurb! • Pages 52-53 Searching for Answers • Pages 36-37 Self Advocates: Meet Michelle Unruh: Advocating for Bullying Awareness • Save The Date: Special Needs Living Empowerment Day - Transitions • Pages 22-24 Local Events • Pages 50-51 New Hope of Indiana Play Project

OWNER/ADVERTISING INQUIRIES

Jamie McCabe 248-882-8448 Jamie.McCabe@n2co.com Featured Family: Meet the Funk Family, Photo by 21 Vines Photography

Scan the QR Code to Subscribe or Nominate:

Scan to share a story or check out https:// linktr.ee/community.stories

Meet Michelle Unruh: Advocating for Bullying Awareness

Pastor’s Corner

Scan or Text the letters SNL to the number 55433 to get the digital copy and text communications.

Looking to advertise or connect more? Scan to schedule an appointment with Special Needs Living Indy.

Nonprofit Spotlight: Epilepsy Foundation of Indiana

November 2023

Sponsor Spotlight

National Adoption Awareness Month

Facebook (@specialneedslivingmagazine) Instagram (specialneedsliving)

Midwest Academy is an intentional educational community serving students in grades 3-12 with ADD/ADHD, language-based learning diﬀerences, high functioning autism, and processing challenges.

The school is designed to develop academic achievement, self-acceptance, and personal accountability. We oﬀer our students a small, engaging educational setting, an inspiring progressive curriculum, and a culture focused on the development of the whole child.

Schedule a tour today. 317-843-9500 www.mymwa.org | 1420 Chase Ct. Carmel, IN | admissions@mymwa.org Special Needs Living Indy

I M P ORTA N T

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800-622-4968 888-673-0002 800-403-0864 317-232-7800 317-925-7617 877-511-1144 317-466-1000

Arc of Indiana www.arcind.org Autism Community Connection www.autismcc-in.org Autism Society of Indiana Blind and Visually Impaired Services (BVIS) Bureau of Developmental Disabilities Services (BDDS) Bureau of Rehabilitation Services (BRS) Deaf and Hard of Hearing Services (DHHS) DHHSHelp@fssa/in.gov Disability Determination Bureau Division of Aging (IDA) Division of Family Resources (DFR) Division of Mental Health and Addiction Down Syndrome Indiana Early Childhood and Out of School Learning (OECOSL) Easterseals Crossroads https://eastersealscrossroads.org

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911 800-545-7763 574-234-7101 317-232-0570 844-323-4636 317-233-4454 317-232-7770 812-855-6508 317-233-1325 844-446-7452 855-641-8382 800-332-4433 800-457-4584 317-232-7770 988 800-772-1213 800-772-1213 877-851-4106 317-871-4032 800-545-7763

Emergency First Steps INSOURCE – www.insource.org Indiana Department of Education: Office of Special Education – www.doe.in.gov/specialed Indiana Family to Family - www.inf2f.org Indiana Family and Social Services Administration (FSSA) – www.in.gov/fssa/index.htm Indiana Governor’s Council for People with Disabilities (GPCPD) Indiana Resource Center for Autism Indiana State Department of Health Indiana Statewide Independent Living Council (INSILC) Indiana Works INSOURCE – http://insource.org/ Medicaid Disability Medicaid Waivers National Alliance on Mental Illness Social Security Administration (SSA) Social Security Disability Insurance (SSDI) Special Education Questions United Cerebral Palsy Association of Greater Indiana Vocational Rehabilitation Services (VR)

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

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We create exceptional, consistent branding in your corporate space. Make a creative first impression with artistic elements, custom furniture, and innovative displays from Corporate Interior Solutions.

Since 2000, CiS has been offering our cutting-edge services in Indianapolis and beyond. Call our office at (317) 890-1100 and request a consultation today. 6

November 2023

"Our team recently had the privilege of completing three projects for the Visually Impaired Preschool (VIP) in Indianapolis! We were able to bring a creative, fun element to millwork in this project that made it come to life."

317-890-1100 • cisindy.net •

@CiSIndianapolis

HELPING YOU

EMBRACE LIFE

TO THE FULLEST

• Online and in-home onboarding for your convenience • Dedicated parent attendant care staff to answer your questions • We are here to support you because even caregivers need care sometimes.

Healing Hands Provides: • Parent Attendant Care • Senior Attendant Care • Structured Family Caregiving

Attendant Caregivers Receive: • Income Ranging from $2,400-$7,200 a month • Health, Dental and Vision Insurance • Paid vacation time (cash out option) • Community Resource Support

317.788.0777 | healinghandsindiana.com Special Needs Living Indy

Meet the Special Needs Living Indy Team

Jamie McCabe — Publisher and Area Director

Tasha Cleaver — SNL Account Executive

Christina McGairk — Editor and Writer

Angela Arlington — Community Engagement Coordinator, Writer and Contributor

Maria Smietana — Editor-in-Chief

Dr. Darolyn “Lyn” Jones — Content Coordinator and Writer

Lisa DeFilippoWriter and Contributor

Heather Gregg — Photographer, 21 Vines Photography

Christie and Nathan Buonanno — Buonanno Photography

Kendal Ford — Kendal Nicole Photography

Paul Hathcoat — Writer and Contributor

Christia Woodford — Publishing Assistant and Local Events

Tanya Sood — Writer and Contributor

DeAndra Yates — Writer

Dorie Zipperle — Writer and Contributor

Sheila Wolfe — Writer and Contributor

Jane Gailey — Contributor

Aaron Olson — Writer

Isaac Roman — Writer and Photographer

Matt Knight — Writer

Angelica N. Gray, MA, BCBA, LBA — Writer

Charles Spray MS, LMHCWriter and Contributor

Kate Miller- Writer and Contributor

November 2023

Special Needs Living Indy

This section is here to give our readers easier access when searching for a trusted neighborhood partner to use. Get to know the businesses that make this magazine possible. Please support them in return and thank them if you get the chance! ABA & COMPREHENSIVE SERVICES K1ds Count Therapy (317) 520-4748

CASE MANAGEMENT Connections Case Management (317) 440-0637

HOME CARE Amiable Home Care Inc. (317) 802-1746

Mindful and Modern ABA Therapies (317) 827-7777

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

HOME CARE & TRANSPORTATION ABC Community Services LLC (317) 516-1178 www.abccommunityservices.com

ABA SERVICES Grateful Care ABA (317) 572-5315 gratefulcareaba.com/ Link to Learn (317) 863-8388 Piece by Piece Autism Center (765) 481-2261 The Umbrella Center (463) 701-0909 ABA/COMPREHENSIVE SERVICES The Hope Source (317) 578-0410 ADOPTION Indiana Adoption Program (855) 677-5437 www.indianaadoptionprogram.org/ ADVOCACY/EVALUATIONS PEAS for Kids (920) 980-1172 ATTORNEY Hostetter & Associates (317) 852-2422 ATTORNEY-WILLS/TRUSTS/ ESTATE PLANNING Law Office of Elizabeth A. Homes LLC (317) 660-5004 BEHAVIOR MANAGEMENT Supportive Behavior Services (765) 337-1895 www.supportivebehaviorservices.com

November 2023

COMMUNITY SUPPORT Achieve Community Services (317) 918-0337 acssupports.com/ Ausome Indy (317) 331-2434 ausomeindy.org/ Indiana ACT for Families (317) 536-6900

HOME HEALTH CARE Comfort Care (317) 552-2039 HOME HEALTH SERVICES Tendercare Home Health Services (317) 251-0700 www.tchhs.net/

COUNSELING SERVICE Mark 2 Ministries (317) 777-8070

HOME MODIFICATIONS / SPECIALTY EQUIPMENT Specialized Home Care Services (888) 506-4182 www.specialized4u.com/

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

INSURANCE State Farm John Cole (317) 430-1958

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

MORTGAGE CrossCountry Mortgage (317) 666-4679

FINANCIAL ENABLE Special Needs Planning, LLC (765) 585-1050 enablesnp.com

MUSIC THERAPY Dynamic Music Therapy (317) 829-6654

WestPoint Financial Group Gordon Homes (317) 567-2005 FOSTER CARE Firefly Children and Family Alliance (855) 677-5437 foster.fireflyin.org

NEUROFEEDBACK THERAPY Indy Neurofeedback (317) 888-8500 PARKS & RECREATION Johnson County Parks & Recreation (812) 526-6809

PEDIATRIC HOME CARE Guardian Care (317) 360-0359 myguardian.care/ REALTOR F.C. Tucker Nicole Lyon (317) 501-0639 SCHOOL Dynamic Minds Academy (317) 578-0410 Midwest Academy (317) 843-9500 SCHOOL - SPECIAL NEEDS The Fortune Academy (317) 377-0544 SENSORY SPACES Corporate Interior Solutions (317) 691-4156 SPEECH THERAPY Positive Interactions Therapy (317) 518-0627 positiveinteractionstherapy.com SUPPORT SERVICES Easterseals Crossroads (317) 466-1000 Joseph Maley Foundation (317) 432-6657 www.josephmaley.org My Quillo (317) 626-4387 myquillo.com/ The ALTRUIST Group, LLC (317) 547-3041 x1005 THERAPY & TESTING SERVICES The Brain Center (317) 748-0034

Special Needs Living Indy

PLANNING FOR THE FUTURE M AY F E E L L I K E A B I G T A S K , BUT LIFECOURSECONNECT WILL HELP BREAK IT DOWN FOR YOU.

Whether you're looking for day-to-day ideas and connections or big picture planning, LifeCourseConnect is the ultimate tool for Individuals and Families in Indiana's Disability community. LCC is here to help you build the future you want for yourself or loved-one, so start today!

As a waiver-supported service, get started creating and living YOUR plan. (317) 626-4387 | LifeCourseConnect.com/Indiana

Special Needs Planning & Elder Law Attorney

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

Live Your Best Life Let Us Help You On Your Path

Elizabeth A. Homes is a special needs planning and elder law attorney. She has been licensed and practicing law since May of 2014. Her practice at the Law Office of Elizabeth A. Homes LLC is focused on Special Needs Planning, Guardianships, Elder Law, Estate Planning, and Probate Work. This includes Wills, Powers of Attorney, Advanced Directives, Trusts, Trust Administration, Medicaid Planning, Special Needs Planning, Guardianship, and Probate. She is admitted to practice law in the State of Indiana. We ask "What If?" so you don't have to ask "What Now?" Residential Habilitation, Day Habilitation, Structured Family Caregiver, Respite, Transportation, Participant Assistance Care, Attendant Care and Home Community Assistance

Supporting Clients by Encouraging Independence Elizabeth A. Homes, Esq., MBA ehomeslaw.com | 317-660-5004 elizabeth@ehomeslaw.com 9245 N. Meridian Street, Suite 301, Indianapolis, Indiana 46260

November 2023

317-516-1178 | 765-615-9356

abccommunityservices.com

6801 Lake Plaza Dr. Ste. A108 Indianapolis IN 46220 We are currently hiring caregivers and accepting new clients.

Sensory Blurb! Cubby Bed Sensory items to better support the community

afety beds are a great option for many individuals who may have a risk of wandering at night, cannot sleep on a standard bed safely or do not stay asleep at night. It can be difficult for a parent to get a good night’s rest when worrying about their child experiencing these behaviors at night, and a safety bed can help reduce those risks! A Cubby Bed has a padded canopy, safety sheets and securable doors on a full-size bed to ensure your loved one can sleep safely. Many individuals can qualify for Medicaid to cover the Cubby Bed! A sensory package can be added to the Cubby bed to provide sensory integration with a circadian light and a soothing speaker for playing music or relaxing sounds which can help the individual sleep better. This sensory package may be covered through all Indiana Medicaid Waiver programs. Have peace of mind and enjoy a good night’s rest while your loved one sleeps safely in their bed. Ruth Roberts at Specialized Home Care Services 621 N Central Ave Connersville, IN 47331 ruth@specialized4u.com (317)-348-0708 Mobile (317)-348-0708 Fax

Because no two people are alike, and neither are their needs. Adaptive silverware such as self-leveling utensils helps individuals be more independent while at the dinner table. Whether your loved one lives with sensory integration, cognitive impairment, or any other special needs, we’re confident in our ability to help you find the right specialized equipment for disabilities. Contact us today Our team at Specialized Home Care Services carries a great selection of air purification systems. (888) 506-4182 | specialized4u.com 621 N Central Ave, Connersville, IN 47331 specializedhomecareservices@gmail.com.

SINCE 2016, N2 HAS DONATED

TO HELP END MODERN-DAY SLAVERY. The N2 Company ― the organization behind this publication and hundreds like it ― is ﬁnancially committed to end human traﬃcking.

Thanks to the businesses within these pages, our Area Directors, and readers like you, we’re able to break the chains of this horrible reality.

A GIVING PROGRAM BY

Padded walls, securable doors, remote monitoring, soothing sensory features and kid tested durability

Visit n2gives.com to learn more about our ﬁght.

Special Needs Living Indy

SAVE THE DATE

Special Needs Living Empowerment Day Transitions Special Needs Living invites you to join parents and caregivers of special needs individuals for a day of encouragement and connections Special Needs Living is putting on an event for parents and caregivers of special needs individuals. This is put on by parents and caregivers for parents and caregivers. The goal of this day is to restore hope through transitions. There will be personal stories shared, detailed information about the different supports shared from panels that will cover the lifespan of a child, teen, young adult or adult, round table discussions and many connection opportunities available throughout the day. No matter where you are in your journey, we know you will leave with some great resources, takeaways and connections. This event will be in person. We will have virtual options available. Thanks to White River Christian Church for hosting, and our supporters for their generosity. Hope to see you there!

Attention Attention Calling all Parents & Caregivers of Special Needs Individuals

DATE AND TIME Saturday, November 11, 2023 1 p.m. – 5 p.m. EDT LOCATION White River Christian Church 1685 North 10th St. Noblesville, IN 46060 We will have in-person and virtual options available. You can reserve your spot here or scan the QR code below. https/www.eventbrite.com/e/specialneeds-living-empowerment-day-tickets376997629057?aff=oddtdtcreator

Scan to Register

Offering free or for-donation Biblical Counseling and Relationship Coaching for families within the Special Needs Community. Coaching - Consulting - Collaborating Follow us on Facebook for exciting updates @mark215

November 2023

Feast Your Eyes On Our Website to Gather Community Resources!

317-605-0060 | connectionsin.com

Independence Park - a place to PLAY for ALL

Amiable Home Care Inc. is a multi-service home care agency. We specialize in helping individuals from all age groups. We assist with errands, light house work, medication reminders, bathing, food preparation, and lots more! We accept A&D and TBI Waivers. For private pay, ask about our rates.

• All Inclusive Playground Remodeled in 2020 featuring an Interactive YALP & Sona Arch • 3 Rentable Shelters • Wheelchair Accessible Trail with JCPL Storywalk • Wheelchair Accessible Basketball Court 2100 S Morgantown Rd Greenwood, IN 46143 812.526.6809 www.jocoparks.com Follow us on Facebook! @injocoparks @jocoind

Providing Behavioral Health Services under the Family Supports Waiver (FSW) and Community Integration and Habilitation Waiver (CIH). We currently offer Participant Assistance and Care (PAC) Structured Family Caregiver Levels 1, 2, 3 Family and Caregiver Training Wellness Coordination Residential Habilitation & Support and Day Habilitation Attendant Care and Respite

317-802-1746 • amiablehomecare.org

@AmiableHomeCareinc Special Needs Living Indy

CHILDREN WITH DISABILITIES DESERVE LOVE AND A FAMILY TOO

IN HONOR OF NATIONAL ADOPTION MONTH Indiana Adoption Program is a statewide initiative in Indiana to find loving, committed, safe, permanent families for children in foster care.

Joshua, age 13: Happy and loving, Joshua spends a lot of time laughing. Sensory activities, toys with sounds and lights, and jumping on trampolines are some of his very favorite things. Joshua loves to give hugs, almost as much as he enjoys getting them. Joshua would do well in a two-parent family with structure and routine. https/www.indianaadoptionprogram. org/project/joshua-8513b/ 16

November 2023

Jon, age 17: Maybe more than anything else, Jon loves figuring out how things work. He likes to take things apart and then, of course, put them back together perfectly! This imaginative teen has a lot of creativity and thinks it would be especially cool to learn how to make his own video games. Jon would do best in a two-parent home with parents who like to stay active and do things together as a family. He’ll thrive in a family that is patient and supportive as he gets used to a new environment. https/www.indianaadoptionprogram. org/project/jon-8577a/

Please see all our beautiful children available for adoption at www.indianaadoptionprogram.org/ indianas-waiting-children/

Rocky, age 13: If you love The Lion King, you’ve got to meet Rocky. All the songs are his favorites, and he’s going to sing along to each one. Always wanting to be helpful, Rocky enjoys taking care of animals and helping around the house. Spiderman is Rocky’s favorite superhero because he helps others, and if he could have one wish, it would be to have superpowers to help others too! Rocky would do well in a single- or two-parent family with a supportive community. He needs a family who will show him unconditional love, help him maintain a consistent routine, and ensure that his physical, social, and emotional needs are met. https/www.indianaadoptionprogram. org/project/rocky-8605

Jayden, age 13: Jayden is all about basketball these days. He loves pick-up games, wants to decorate his room with basketball posters, and dreams of seeing an NBA game at Madison Square Garden. Give him three wishes, and he’ll use one of them to become the greatest basketball player who’s ever lived! Jayden would do best in a two-parent home with a strong support system. A close-knit, stable family that plays games, eats dinner together, and spends quality time together would be a great fit for Jayden. https/www.indianaadoptionprogram. org/project/jayden-8650b/

Dillion, age 12: Happy-go-lucky Dillion is sweet, loving, and very active. He enjoys riding his bike and playing basketball, and has recently discovered a love of hot rods and racecars. Positive, one-on-one attention and patience go a long way with Dillion. It will be important for his adoptive family to advocate for his emotional, medical, and educational needs, and to help him develop his social skills as he gets older. https/www.indianaadoptionprogram. org/project/dillion-8720/

Richard, age 14: Richard is a resilient teen who loves trying new things, collecting Pokemon cards, and building elaborate LEGO structures. He’s a natural-born helper and especially enjoys raking leaves and shoveling snow. (But, he might want to stop and make a snowman, too!) He needs consistency and routine with little variation, as that helps him feel secure. Richard would like to have a mom, dad, older siblings, and a pet. Smart and sensitive, Richard will thrive with positive reinforcement and realistic expectations. https/www.indianaadoptionprogram. org/project/richard-9128/

Lucas, age 16: Lucas is an active teen who likes staying busy. He loves the outdoors, and can’t wait for another chance to do summer camp next year - he’s discovered an affinity for fishing! Because he’s interested in so many activities, Lucas will do best in a family that likes to stay active and involved. He would love a forever home with siblings, and where the parents are patient and consistent in their expectations. https/www.indianaadoptionprogram. org/project/lucas-9028/

Matthew, age 15: An adorable guy with a great smile and big personality, Matthew likes to say hello by giving high fives! He’s at his happiest when he’s with people he cares about – especially if they’re playing outside doing cartwheels or running! Matthew recently learned how to sign “I love you,” and is always learning new communication techniques. He will thrive in a family with structure and supervision where praise and activity are abundant. https/www.indianaadoptionprogram. org/project/ matthew-9144/

Sean, age 17: Sean is full of life, very curious, and always up for a snack. While he can be a little shy, if he really likes you he’ll show affection by resting his head on you. Sean enjoys sensory activities, soft items, and anything with music. Intuitive and willing to explore outside his comfort zone, Sean will thrive in a patient family that has a consistent routine and can commit to his needs. https/www.indianaadoptionprogram. org/project/sean-9157/ Special Needs Living Indy

Davon, age 14: In Davon’s own words, “I’m a good kid and I work hard to do my best!” Whether it’s swimming laps or learning new math equations, Davon beams with pride when his efforts are recognized. If it were up to Davon, he would have an adoptive family and a dog, all of whom would show him unconditional love and security. He will thrive in a family committed to patiently helping him achieve his goals. https/www.indianaadoptionprogram. org/project/davon-9233a/

November 2023

LaShawn, age 8: Silly and sweet LaShawn finds just about everything funny, so you’ll never have trouble making this guy laugh. He’s decided that when he grows up, he wants to be a fireman who has lots of fancy cars! LaShawn would do well in a two-parent home where he can receive plenty of one-on-one attention and continued support. He deserves a family that delights in him! https/www.indianaadoptionprogram. org/project/lashawn-9328/

Conner, age 10: Chatty and affectionate, Conner is an adventurous kid who’s always up for trying new things. He loves animals, especially farm animals, and is a great helper in the horse stables! He’s also a huge fan of books – give Conner three wishes, and all three of them will be for new books to read! He would like a forever home that has at least one sibling he can play with. https/www.indianaadoptionprogram. org/project/conner-9341/

ALTRUIST

IT'S ALL TRUE: U COME BEFORE I

JOIN OUR TEAM! ARE YOU LOOKING FOR PASSION-FILLED WORK? Explore a position with us as a

Community Liaison Professional & Direct Support Professional

Work with a purpose! In this role, you will provide interactive supervision and support to children and adults with intellectual disabilities in their homes and community. We are looking for determined individuals that can achieve this through respectful interactions in our client's homes, the creative use of resources, networking and involvement in the community at large. To learn more, scan the QR code to be taken directly to the open positions listed on our Careers page.

7172 GRAHAM ROAD, SUITE 125 • INDIANAPOLIS, IN 46250 • (317) 547-3041

We Love Kids!

Create enjoyable experiences in the community!

Competitive pay plus Sign-On Bonus $0.62 per mile Mileage Reimbursement

Requires: Drivers License Registered Vehicle Auto Insurance Smart Phone

18 Years or Older High School Diploma, HSE, GED Pass Background Check Pass Drug Screen

most dental insurances and Medicaid accepted

5-Star Rated Pediatric Dentistry

• providing tools to use in future appointments • establishing at-home dental hygiene routines • preparing you and your child to work through fear and anxiety Call 317-842-8453 to book an appointment. 9885 E. 116th Street, Suite 100 | Fishers, IN 46037 babytoothcenter.com Special Needs Living Indy

HeartSOS

Children, Adolescents, Young Adults with ASD & Related Needs

Mental Health Counseling

Anxiety, Depression, Attachment, PTSD & Relationships

Speech Therapy

Self-Advocacy, Articulation, Feeding, Apraxia & Relationships

Family Guidance

Social Communication, Emotional Regulation, Flexible Thinking & Relationships

Occupational Therapy

Executive Functioning, ADLs, Sensory Processing & Relationships Indy & Terre Haute Clinics 20

November 2023

Outpatient Services for Individuals & Families

We Hear Your SOS! Reach out at asdheartsos.com

Special Needs Living Indy

Local Events

Christia Woodford — Publishing Assistant and Local Events

BY CHRISTIA WOODFORD

Note: Don’t forget to apply for the Access Pass! The Access Pass Program allows families that meet the specific requirements listed below to visit The Children’s Museum of Indianapolis and all participating locations for $2 per family member per visit for up to two adults and all dependent youths living in the household. You qualify if you receive: • 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. MUSEUMS The Children’s Museum of Indianapolis First Thursday Nights Nov. 2, 4:00 pm The first Thursday of every month, 4:00 PM-8:00 PM. Go back in time to the Age of the Dinosaurs and explore the basics of science through fun, hands-on activities in Dinosaur Train: The Traveling Exhibition Travel to Greece without leaving Indiana in Take Me There®: Greece Uncover ancient artifacts in National Geographic Treasures of the Earth https/www.childrensmuseum.org/visit/ calendar/event/273/2023-04-06 WinterFaire Nov. 18- Feb. 11, 2024 WinterFaire is a magical indoor world featuring a festive, carnivallike atmosphere, fun-filled games, loveable critters, and hands-on activities. Play, laugh, and make lifelong memories together in this one-ofa-kind indoor winter experience. Zoom down WinterSlide 22

November 2023

The animals of WinterFaire have used the frozen fountain’s magical water to turn the beloved slide in the Sunburst Atrium into the icy WinterSlide! The “snow” on either side will light up as you race toward the bottom. How fast will you go? Visit with Santa Santa arrives at WinterFaire on Nov. 24, collecting water from the frozen fountain to help power his sleigh and reindeer, gathering gifts from Artisan Square, and posing for photos with you! More details about dates and times coming soon. https/www.childrensmuseum. org/exhibits/winterfaire Various Events Nov. 1- Nov. 30, Opens at 10 AM 3000 N. Meridian St., Indianapolis, IN 46208, 317-334-4000 https/www.childrensmuseum.org Conner Prairie — Indiana’s Living History Museum A Merry Prarie Holiday Festival Nov. 24- Dec. 22, 5:30 pm- 9:30 pm Join us for Central Indiana’s most beloved holiday festival and make the season magical at A Merry Prairie Holiday. Across acres to explore, surround yourself with thousands of lights and capture that perfect moment. There is something for everyone to enjoy this year. Returning this year—The William Conner House will be transformed into a magical 3D projection mapping holiday show that will capture the feel and nostalgia of the holidays. Bring the whole family to see our presentation of “’Twas The Night Before Christmas,” and see how 3D projectors can be used to transport you 200 years back into the story. Leave the skates at home and take a spin at Frosty’s Skating Rink where you can slide around like you are skating on real ice. Socks are not provided, but the fun is!

Explore the illuminating LED Reynolds lights. With new displays across acres to explore, be wowed by the thousands of lights that capture the spirit of the season. Step into historic Prairietown for Historic Holidays and Christmas Eve traditions of the 1800s. Experience our “Holidays From Around the World” old-fashioned crankie show at the Potter Shop Kiln Shed. Then, head over to the North Pole Village to get a selfie with Santa and meet Mrs. Claus and the elves as they get ready for the big night. Have you been naughty or nice this year? Trinket Puddingmoon, Santa’s official list keeper, knows. Check in and find out what list you made. With thousands of twinkling lights to guide your way, explore the grounds and experience a memorable winter wonderland stroll. Stop by Café on the Common and sing along to a revolving roster of local performers in Blitzen’s Bandstand. Don’t forget to take a ride on Kringle’s Carousel or get a rush zooming down our 150-foot Polar Bear Plunge tubing hill. From glowing lights to warm delights, there is something for everyone to make lasting memories and get into the festive mood. For Tickets: https/www. connerprairie.org/explore/thingsto-do/merry-prairie-holiday/ Sensory-Friendly Hours The second Sunday of every month, from 10 AM to noon, are sensoryfriendly hours at Conner Prairie! Enjoy a calm environment. Check-in with Guest Relations, stating that you are here for sensory-friendly hours. You will get free admission and may stay as long as you wish. Various events Nov. 1- Nov. 30, 10:00 am- 10:00 pm

13400 Allisonville Road, Fishers, IN 46038 Phone: 317-776-6000 or 800-966-1836 https/www. connerprairie.org/events/list SPORTS Indy Fuel Nov. 10, 17, 18, 19, 24, 29 Indiana Farmers Coliseum, 1202 E 38th St, Indianapolis, IN 46205 https/www.indyfuelhockey.com/ Indianapolis Colts Nov. 26, Buccaneers Lucas Oil Stadium, 500 S Capitol Ave, Indianapolis, IN 46225 https/ www.colts.com/schedule/ Indiana Pacers Nov. 3, 6, 8, 9, 19, 22, 24, 27 Gainbridge Field House, 125 South Pennsylvania St. Indianapolis, IN https/www.nba.com/pacers/ FAMILY FUN Joseph Maley Foundation Fall Family Fun Day Nov. 5, 2:00 pm- 4:00 pm Joseph Maley Enrichment Center, 7176 Lakeview Pkwy W Dr, Indianapolis This event provides adaptive games and recreational activities that are fun for all ages and abilities! Please visit josephmaley. org to register and learn more. Fall Harvest Party Ages 18+ Nov. 10, 6:00 pm- 8:00 pm Camp Red Cedar, 3900 Hursh Road, Fort Wayne, United States Join our Fall Harvest Party & spend the evening making memories with friends! Individuals must be able to care for themselves. The parent/caretaker should attend if additional assistance is needed. This event is free with pre-registration only. Participants are required to pay $5 at the door and have the option to donate to funding for future socials. https/www.eventbrite.com/e/ adult-dance-harvest-party-2023registration-483861511807 CHRISTMAS NIGHTS OF LIGHTS Nov. 10- Dec. 31, Use the entrance at Gate 12 - located on 42nd Street

Christmas Nights of Lights is returning to Indianapolis for the 2023 season! Come see over 1 million lights synchronized to traditional and newer, rocking Christmas music played through your car stereo. Pack your vehicle full of friends and family to enjoy the show and begin a new Christmas tradition with us. ONLINE RESERVATIONS ARE REQUIRED No cash or credit will be accepted at the ticket booth. With the new reservation system, wait times should be under an hour. https/www. indianastatefair.com/events/2023/ christmas-nights-of-lights2 TICKET EXCHANGES With limited tickets available each night, there are NO REFUNDS. Exchanges for a different night or time slot based on availability. Exchanges can only be made 5 days prior your original ticket date. To exchange your tickets, please call 317-593-4046. “The Lion, the Witch and the Wardrobe” Put on by Take ONE, Fortune Academy’s Educational Theater Company Nov. 16 at 1:30 and Nov. 17 at 7:00 pm Fortune Academy Gymnasium, 5626 Lawton Loop E Dr. Indy, 46216 Tickets for $10 can be purchased at: www.thefortuneacademy.org Indianapolis Zoo Christmas at the Zoo Nov. 18- Dec. 30, 5:00 pm- 9:00 pm, 10:00 pm Fridays and Saturdays EXPERIENCE OUR BELOVED HOLIDAY TRADITION! Dating back to 1967, the Indianapolis Zoo was the first zoo in the nation to hold a holiday lights event. Year after year, Christmas at the Zoo continues to grow. For our 55th year, we’re adding beautiful new décor to enhance your holiday experience. And the best part is it’s all included with regular admission! Under the Bicentennial Pavilion, you’ll discover Santa’s Village featuring: Extra Opportunities to Visit Santa: Meet the Kris Kringle in Santa’s Study warmed by Peterman Brothers from 5pm until close. Or escape to the tropics to see Vacation Santa from

3-9 pm at Flights of Fancy. With the help of his flamingo flock and some holiday magic, the Jolly Old Elf can be in two places at once to greet even more children this year. Visits with Santa continue through Dec. 23. Mrs. Claus’ Kitchen: Visit with Mrs. Claus and help decorate cookies through Dec. 30. Santa’s Barn: See Santa’s sleigh and a few of his reindeer through Dec. 30. Polar Pathway: Have your camera ready to remember the moment you step inside the glittering tunnel and are surrounded in glowing lights! Look for the one-way entry through the tunnel this year. Storytime with Sprinkles & Holly: Meet our new holiday characters, Sprinkles and Holly, and enjoy their nightly storytelling outside of Cafe on the Commons. Penguin Encounter: Get up close to these winter-ready birds from 6-8pm (animal and weather-dependent). Tinsel Tavern: Enjoy holiday-themed cocktails featuring Hotel Tango spirits and wines from Daniel’s Vineyard. Mirror Maze: Laugh your way through the fun twists and turns of the Mirror Maze! https/www.indianapoliszoo.com/ events/christmas-at-the-zoo/ Various events are scheduled daily Check the calendar for events. https/www.indianapoliszoo. com/visit/daily-schedule/ 1200 W. Washington St., Indianapolis, IN 46222 317-630-2001 9 AM - 5 PM, Mon. - Thur., and 9 AM - 7 PM, Fri.-Sun. and holidays Special Needs Living Family Fun Day at Adrenaline: Save the Date Dec. 7, 6:00 pm- 8:00 pm Adrenaline Family Adventure Park,10080 East 121st Street #Suite 182 Fishers, IN 46037 Special Needs Living Family Fun Night (Sensory Friendly hours) Adrenaline is hosting this event for the special needs community, individuals, families, Special Needs Living Indy

DSP, and Caregivers, of any age, along with the supporters of Special Needs Living. This will be a great way to connect with other families in the community, enjoy an evening of fun, and connect with some great resources. Come out and enjoy this fun evening. Register here to reserve your spot. Tickets are normally $25 each and socks are $3 but for this event, you can pay the day of at Adrenaline they are lowering tickets to $10 each and that will include socks. To save time please fill out your waiver here: https/adrenalinefishers. pcsparty.com/sign/ Over 50,000 square feet of fun and adventure for all ages! All your favorites: dodgeball, slam dunk, jousting, ninja warrior course, trampolines... plus all-new attractions! Ropes course, warped wall, stunt fall, avalanche slide, all sports course, climbing and more! Our attractions are perfect for active fun at parties and special events! Loved by kids of all ages! The Studio Movie Grill 3535 W. 86th St., Indianapolis, IN 46268 317-315-8113 Sensory-friendly screenings of movies! Check the website for movies and times. https/www.studiomoviegrill.com/ movie/special-needs-screenings The Arts Beef and Boards Joseph and the Amazing Technicolor Dreamcoat Oct. 5- Nov. 19 White Christmas Nov. 24- Dec. 31 A Christmas Carol - 2023 Dec. 1- Dec. 22, selected dates 9301 Michigan Road, Indianapolis, IN 46268 317-872-9664 https/www.beefandboards. com/Online/default.asp Jubilate Choir Butler University, Lilly Hall, Room 133 Wednesdays, 6:45-7:30 PM The Jubilate Choir is for singers with special needs in grades 3-9. Singers with varying abilities meet each week to grow musically. This tuition-free choir focuses on proper singing techniques, 24

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music theory and sight-reading, partsinging, and social skills involved in being a member of a musical ensemble. Though Jubilate has, at its core, the same goals as other choirs in the Indianapolis Children’s Choir (ICC), singers in Jubilate engage in additional activities like visual and tactile experiences that are catered specifically to the current members of the choir. Director: Lauren Southard For more information, contact Lauren Southard at 317-940-8065 or lsouthar@icchoir. org. https/icchoir.org/special-needs/ Gigi’s Playhouse Various classes during the week. 5909 E. 86th St., Indianapolis, IN 46250 317-288-8235 indy@gigisplayhouse.org https/gigisplayhouse.org/ indianapolis/sfcalendar/ EVENTS Richmond Disability Resource Fair Nov. 4, 11:00 am- 2:00 pm Ivy Tech Community College, 2357 Chester Blvd, Richmond, IN 47374 st Annual Richmond Indiana Disability Resource Fair will provide information about community resources and services for individuals with intellectual and developmental disabilities and their families. Exhibitors will talk about the services and resources to assist individuals and families. There will be interactive areas, food and more! If interested in being a vendor, please reach out to info@connections-in.com Ask the Advocate Free Live Zoom Events Sponsored by IEP Services, LLC. Oct. 9, Nov. 13, Dec. 11, and Jan. 8 from 6:30 pm- 8:00 pm The second evening of each month Do you need help getting your child with special needs the services they NEED and DESERVE at school? Each session will begin with a short informative presentation followed by an open Q & A session where parents can get answers about their child’s circumstance and their right to a Free Appropriate Public Education. Please email sheilawolf@sbcglobal. net for more information. Zoom link:

https/us06web.zoom.us/meeting/ register/tZwvceCsrTIiGdzwNGqnTmJ_ q7Yf6af985qV#/registration Special Needs Living Empowerment Day - Transitions Nov. 11, 1:00 pm- 5:00 pm White River Christian Church, 1685 North 10th St., Noblesville, IN 46060 Special Needs Living invites you to join parents and caregivers of Special Needs individuals for a day of encouragement and connections Special Needs Living is putting on an event for Parents and Caregivers of Special Needs individuals. This is put on by parents and caregivers for parents and caregivers. The goal of this day is to restore hope through transitions. There will be personal stories shared, detailed information about the different supports shared from panels that will cover the lifespan of a child, teen, young adult or adult, round table discussions and many connection opportunities available throughout the day. No matter where you are in your journey, we know you will leave with some great resources, takeaways and connections. This event will be in person. We will have virtual options available. Thanks to White River Christian Church for hosting, Special Needs Living & the supporters. Hope to see you there! We will have in-person and virtual options available. You can reserve your spot here or scan the QR code below. https/www.eventbrite.com/e/specialneeds-living-empowerment-day-tickets376997629057?aff=oddtdtcreator

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.

Our personalized programs offer support to help people of all abilities achieve their hopes, dreams, and goals within the communities they call home. By encouraging and supporting all individuals to develop and maintain healthy, meaningful relationships within their communities to lead more fulfilling and complete lives, Achieve Community Services supports Individual choice as the centerpiece for all services we provide.

Learn more about our services, contact us today!

(317) 918-0337

acssupports.com Habilitation and Respite Services | Caregiver Training Family Support | Transportation

@AchieveCS 8202 Clearvista Parkway, Suite 6A, Indianapolis

Special Needs Living Indy

Neurofeedback is a non-drug, non-invasive solution to symptoms related to brainwave dysregulation. It's natural and offers a fix to the problem, not just a bandage that masks the symptoms.

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

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Schedule a consultation today!

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November 2023

Beyond writing for handwriting …. BY TANYA MALIK, OTR

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.

Psychotherapy for children, adolescents and adults. Neuropsychological Testing Forensic/Legal Evaluations Psychotherapy & Caregiver Consults CogMed Training Tanya Malik , OTR

hen analyzing a child for handwriting readiness, the dynamics of simple letter formation, prewriting strokes, or academic work are all considered. Being a pediatric occupational therapist and a direct service provider to many children who have difficulty producing written work I not only look at their work samples but also assess how a child holds her pencil, the strength in her hands to hold the writing instrument, finger mobility, joint positioning and posture. As caregivers or teachers we sometimes forget that there are certain prerequisites for our child to write legibly. Many times a parent tells me that their child has a good pencil grip but they still cannot produce homework or written class assignments. In those cases, I watch out for dynamic finger movements, hyperextension of joints, overall functionality of the hand and other physical and cognitive skills that go into producing handwritten work. Lots of fidgeting or switching of the grasp is a sign that the child is getting fatigued in the hands. Joint integrity of the hands, fingers and wrist needs to be analyzed as a part of the pencil grasp as well. A very tight or loose grasp pattern can put undue pressure on the joints of the hand. Another thing to watch for is posture. If the child is unable to maintain an adequate posture (for example, if she slouches or presents with poor core strength) it will greatly impact her fine motor skills and hinder handwriting development. There are many other fine motor skills needed for the development of good handwriting and successful academic work. If you feel that your child is having difficulties with handwriting, please reach out to an occupational therapist or contact me at Tanyamalikotr@gmail.com to discuss your concerns.

Animal-Assisted Therapy

317-748-0034 braincenteratgeist.com

Special Needs Living Indy

NONPROFIT SP OTLIGHT

Epilepsy Foundation of Indiana BY ANGIE ARLINGTON

he mission of the Epilepsy Foundation of Indiana is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives. Specifically, the Foundation seeks to: 1. Connect people to treatment, support and resources 2. Fund innovative research and the training of specialists

November 2023

3. Educate the public about epilepsy and seizure first aid “The Indiana chapter supports and mobilizes the epilepsy community through educational activities, direct services, advocacy, and research,” JoJo Gentry, Indiana’s Advisory Board Chair, explains. “It also seeks to educate the general public to better understand epilepsy and seizure disorders, including knowing proper seizure first

aid. From groundbreaking research into SUDEP (sudden unexpected death in epilepsy) support, local educational programs, and a 24/7 Helpline, the Epilepsy Foundation of Indiana is here to help.” More than 68,000 People in Indiana are Living with Epilepsy. THE SUDEP PROGRAM:

SUDEP is said to occur when a person with epilepsy dies unexpectedly and was previously in their usual state

of health. The death is not known to be related to an accident or seizure emergency such as status epilepticus. When an autopsy is done, no other cause of death can be found. Each year, more than 1 of 1,000 people living with epilepsy die from SUDEP. However, it occurs more frequently in people with epilepsy whose seizures are poorly controlled. “There is increasing awareness of the dangers of fire and sudden infant death syndrome (SIDS),” JoJo shared. “Yet each year, SUDEP kills more

“The Indiana chapter supports and mobilizes the epilepsy community through educational activities, direct services, advocacy, and research,” — JOJO GENTRY

Americans than either of these. The Epilepsy Foundation understands and places a priority on the importance of educating and supporting everyone affected by epilepsy.” “Unfortunately, [many] people living with epilepsy haven’t heard of SUDEP, which we encourage medical professionals to talk about more often,” she added. “The SUDEP program was formed nationally in 2013 to drive awareness and education for those living with epilepsy, their caregivers, physicians, medical examiners, and the public. The foundation believes that by building awareness and working together, we can prevent SUDEP.”

Special Needs Living Indy

What is Scripting?

Scripting is a term often used synonymously with delayed echolalia

Both terms refer to utterances (also known as gestalts) that are repeated after a significant delay. It could be hours, days weeks or months later. (Rizant & Rydell, 1984)

These gestalts may come from videos, books, movies, TV shows, communicative partners, songs, etc.

Children who use delayed echolalia/scripting to communicate are gestalt language processors

Julia Walker, M.A., CCC-SLP is certified to use the gestalt language processor framework within play-based, child-led speech therapy sessions.

Contact Positive Interactions Therapy for more information or to schedule a free consultation.

317 -518-0627

November 2023

P O SI TIV E INTE R AC T IO N ST HERA P Y. C O M @ P OSITIV EIN TERAC TIONST HERAPY

ASK THE ADVOCATE

Free Live Zoom Events Sponsored by IEP Services, LLC WHEN: November 13, from 6:30 pm to 8:00 pm

Do you need help getting your child with special needs the services they NEED and DESERVE at school? Each session will begin with a short informative presentation followed by an open Q & A session where parents can get answers about their child’s circumstance and their right to a free appropriate public education. Please email sheilawolf@sbcglobal.net for more information. Welcome! You are invited to join a meeting: Ask the Advocate. After registering, you will receive a confirmation email about joining the meeting.

Sheila A. Wolfe; Special Education Consultant

Special Needs Living Indy

MAKING A DIFFERENCE

MEET DR. MAYOR HODGES, Improving Accessibility One Act at a Time BY DR. DAROLYN “LYN” JONES AND TENDRA DUFF

Meet Dr. Mayor Treva Hodges. That’s what the good citizens of Charlestown, Indiana call their mayor. Hodges is the city’s first female mayor and the first female mayor in the history of Clark County, one of Indiana’s southernmost counties. One foot over and you are in Kentucky. Hodges is new to politics but not to advocacy. She previously taught at the University of Alabama in Communication Studies, Argumentation, and Debate. She and her husband moved to Charlestown to help care for some of his family members. She finished her Ph.D. in Humanities and Women and Gender Studies at the University of Louisville and was running for mayor at the same time because she was frustrated with missed opportunities to improve Charlestown. Her Ph.D. hooding ceremony coincided with her swearing-in as mayor. But that’s how Dr. Mayor Hodges operates—she always has

November 2023

several irons in the fire, and she successfully manages them all. Part of Hodges’s campaign promise was to listen. As soon as she entered office, a grandmother posted on Facebook that she could not access the city’s park with her granddaughter who used a wheelchair because the handicapped parking spot had no lined space to allow her granddaughter to safely exit the vehicle. Someone forwarded the issue to Hodges and she thought, “that’s an easy fix!” She had the town’s facilities manager paint the appropriate crosshatch lines. Problem solved. That one small act snowballed into several others. Improving accessibility in the City of Charlestown became a priority. Hodges immediately began looking at the city with a different perspective and implementing relatively easy modifications that would improve access, including adding new parking spaces that allowed for wheelchair loading and unloading and trading portable toilets at their most used parks with accessible units. When asked why a non-disabled individual would be interested in advocating for the disabled, Hodges said she has always been interested in activism for those who have historically been marginalized. Then her husband suffered a serious injury, and the issue became personal. They found the world to be very inaccessible to his inclusion and participation. Hodges turned a focused eye to Charlestown’s programming for seasonal public events and worked to ensure sensory-specific times and accessible options for the Touch-aTruck, Easter, and Christmas events. She set to work on longer-term changes as well. When completing the city’s Parks Master Plan in 2020/2021

Each summer, the City of Charlestown hosts a Legends for MLB Camp for kids of all skill levels and abilities using one field for those with special needs.

During the Bunny Bash Easter Dash event, a sensory friendly hunt featured eggs placed on cones to make it easier for those in wheelchairs to find eggs.

Mayor Treva Hodges meets with a visitor during the portion of the seasonal Easter egg hunt designed for those with special needs.

Hodges and her team invited a focus group of parents who have children that live with a variety of disabilities. Hodges wanted to ensure that the park’s planning included all children.

It became apparent early on that the city needed to be more responsive about building accessible spaces. In October 2022, Charlestown was awarded a $150,000 grant from the Community Foundation of Southern Indiana to replace outdated play equipment in their most-used city park with a fully accessible playground. Using feedback and stories collected from parents and caregivers in the community, a playground was designed that would welcome everyone. The new playground will have a solid play surface floor, ADA steps and a ramp to access slides, accessible swings, an accessible spinner, and a special sensory hut. Charlestown, under Hodges’s leadership, has also taken steps to review opportunities for people who have become disabled as a result of aging. The town’s current initiative is to increase enrollment in the Charlestown Senior Citizens Club and to renovate the Senior Center. Another effort has acknowledged the needs of the city’s disabled veterans and military caregivers by formally designating Charlestown as a Hidden Heroes Community. Hidden Heroes is a nonprofit whose mission is to raise awareness of the issues facing military caregivers every day, inspire communities to take action in supporting military caregivers, and connect military caregivers to resources.

Members of the inaugural Disability Advisory Committee and their families were recognized in the 2023 Founders Week Parade in Charlestown.

Hodges’s goal as mayor is to ensure that decision-making in Charlestown is community-led. She believes that collaboration with residents, businesses, service providers, and visitors will help make the Charlestown community more welcoming, more vibrant, and more engaged. Community partners play a significant role in that success. Jennifer David with Outward Bound Support Services has been influential in Hodges’s initiatives. David has helped in identifying areas of need and in pointing out solutions. She pointed Hodges to a grant opportunity that allowed the city to acquire communication boards for their emergency response teams.

Members of the community join city staff during the announcement of receiving a 2022 Quality of Place – Pathways to Progress grant through the Community Foundation of Southern Indiana which aided the city to install the city’s first inclusive playground at Greenway Park.

These boards, made available to the city through the Autism Society of Indiana, allow first responders and staff to communicate with residents and visitors who might be nonverbal, have limited English speaking skills, or who for any other reason are unable to communicate verbally with responders. The boards use recognizable pictures, phrases, and an alphabet. David and her support network of parents and caregivers also helped Hodges organize the city’s first holiday dance party and dinner for families of people living with disabilities last December. It’s Hodges’s hope to continue to partner with David and others to increase programming options. After the successful holiday event, David and Hodges began chatting about how to ramp up the city’s disability inclusion efforts even more. From that discussion, a Disability Advisory Committee was created to assess the City’s spaces and programming and recommend improvements as Charlestown grows. The committee has seven members and includes people who live with disabilities, caregivers, a service provider, and an adult advocate. The committee currently meets monthly and has begun a formal review of public access places.

Special Needs Living Indy

In addition to the fully accessible playground described above, some of their suggested initiatives include: • adding specialized artificial turf in the teen area of one of the parks because the turf typically used in parks or football fields interferes with hearing aid use; • updating public buildings with wider doorways, accessible bathrooms, and lifts in interior spaces; • adding accessible trails to a planned 70-acre park and civic center that will have accessible trails and an accessible space; • more sensory-friendly and accessible public events; • and finally, spreading awareness and educating the citizens of Charlestown about these needs. These initiatives are not just good for individuals with disabilities, they are good for senior citizens, for parents with children in strollers, and for children in general. Inclusion benefits everyone in the community. When asked what her advice would be to other city leaders about their response to disability inclusion, Hodges said, “We hear about ADA, and we think it’s hard and expensive— but it’s not. Just listen and be okay with being wrong— thank someone for telling you what doesn’t work and then fix it. If you are building a new building, make it fully accessible. You are not going to be perfect,

Mayor Treva Hodges with Police Chief Timothy Wolff and Outward Bound Support Services owner Jennifer David with autism cards when they arrived.

there will be barriers. But if you are looking for them, learning about them, and then doing whatever you can to remove the barriers and make your community truly welcoming, then you are doing the right thing.”

The City of Charlestown offers train rides and a variety of activities throughout the year with River Crossing Assisted Living Community. 34

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Hodges says serving as mayor has been the honor of her lifetime. She is excited to keep Charlestown growing and changing. Her goal is to make it the most welcoming and accessible city in Southern Indiana. Learn more about Hodges’s critical work in these news articles: https/www.cityofcharlestown. com/222/Disability-Services https/www.cityofcharlestown. com/210/Hidden-HeroesCity---Military-Caregivers https/www.wlky.com/article/ charlestown-police-special-pictureboards-improve-communicationvulnerable-populations/41397904 https/www.whas11.com/article/ news/local/indiana/charlestowninclusive-playground-greenwaypark-indiana/417-e066195e-eca840a6-95a0-e9b5f83745df

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SELF ADVOCATES

MEET MICHELLE UNRUH: Advocating for Bullying Awareness BY MICHELLE UNRUH

My name is Michelle. I am 34 years old and on the autism spectrum. I was bullied severely from the time I started school at 4 years old until I graduated from high school. It was a very sad time for me and my family. All this bullying happened to me because I was different. But I continued to stay positive and help others despite what I was going through. I won many citizenship awards and was always known for my smile and no-give-up attitude during school! When I graduated from high school I still didn’t feel like I quite fit in anywhere. I didn’t have many friends and didn’t know what my purpose was. But I always enjoyed following stories of people who inspired me. When Covid hit in 2020, a friend said to me that I should try coloring to stay busy. I thought no, I couldn’t. I struggled with fine motor skills problems since age 4. I couldn’t hold onto a pencil and went through lots of occupational therapy for that. Then I thought about it more and how I really needed to keep busy so I tried [coloring] a couple of small pictures and thought, “this isn’t too bad.” That’s when it hit me. I had found my purpose. I started an autism awareness page on Facebook and started coloring pictures for others who inspired me and to cheer others up. For quite a few years I had been following the story of Julianne Miszk. She was a successful para-athlete and a very kind giving lady even while fighting bone cancer in her jaw. She was a true inspiration to me. She never gave up even while struggling with a disability and cancer! I decided I wanted to color her a picture, so I reached out to her mom. She said yes, Julianne loves butterflies and fairies, and I colored her a butterfly picture. Julianne received it two days before she passed away! I sadly never got to meet her but the best thing that came out of what I did for her is that she gave me the gift of friendship with her family and friends! I now have an amazing group of friends that I never had. I continue to be a strong 36

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That’s when it hit me. I had found my purpose. I started an autism awareness page on Facebook and started coloring pictures for others who inspired me and to cheer others up.

advocate against bullying, and in October of 2021, I was interviewed on an autism perspective channel for Bullying Awareness Month! I now make bracelets and have donated money to a foundation called Kids Help Phone. It is a helpline for children to talk with counselors if they’re going through a traumatic event in their life. I’ve even reconnected with past teachers who always believed in me and told them what I went through has made me stronger. I also continue to be an autism advocate; my Facebook page recently hit 700 followers! I hope someone reading my story will have the strength to not give up if they are being bullied. I’m thankful for strong family and friend support that never let me give up!

I now have an amazing group of friends that I never had. I continue to be a strong advocate against bullying, and in October of 2021, I was interviewed on an autism perspective channel for Bullying Awareness Month! Special Needs Living Indy

November 2023

Special Needs Living Indy

SAVE THE DATE IN DECEMBER!

Special Needs Living Family Fun Day at Adrenaline WHEN: December. 7, 6:00 pm- 8:00 pm WHERE: Adrenaline Family Adventure Park, 10080 East 121st Street #Suite 182 Fishers, IN 46037

Special Needs Living Family Fun Night (sensory friendly hours). Adrenaline is hosting this event for the special needs community, individuals, families, DSP, and caregivers, of any age, along with the supporters of Special Needs Living. This will be a great way to connect with other families in the community, enjoy an evening of fun, and connect with some great resources. Over 50,000 square feet of fun and adventure for all ages! All your favorites: dodgeball, slam dunk, jousting, ninja warrior course, trampolines...plus all-new

attractions! Ropes course, warped wall, stunt fall, avalanche slide, all sports course, climbing and more! Our attractions are perfect for active fun at parties and special events! Loved by kids of all ages! Come out and enjoy this fun evening.

To save time please fill out your waiver here: https/adrenalinefishers. pcsparty.com/sign/ Register here to reserve your spot:

Tickets are normally $25 each and socks are $3 but for this event, you can pay the day of at Adrenaline. They are lowering tickets to $10 each and that will include socks. https/www.eventbrite.com/e/ special-needs-living-familyfun-day-at-adrenaline-tickets687441665527?aff=oddtdtcreator

Estate Planning

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.

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Experienced Attorneys Serving Hendricks, Boone, and Marion Counties and beyond. Call us today 317-852-2422 or visit hostetterlegal.com to schedule your consultation. 40

PEAS for Kids

November 2023

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

Behavior Management at Supportive Behavior Services https://www.youtube.com/@indianabehaviorassociation

Why choose Supportive Behavior Services: The behavior consultants at Supportive Behavior Services are the industry's best and largest team in Indiana. They are comprised of over 100 master’s level behavior consultants that continually provide quality supports for the individuals and families that we are fortunate enough to serve. We place an emphasis on face-to-face consultations and observations across all settings where the individual beneﬁts from our support (home, academic environments, day programs, aba centers, work, and community). If you are interested in learning more about our behavior management services and team of behavior consultants, please complete our contact form on our website or email us at SBSMain2020@gmail.com Supportive Behavior Services is a Behavior Management company created by behavior consultants to empower behavior consultants across Indiana to better serve individuals with intellectual and developmental disabilities. We offer both Level 1 (BG10) and Level 2 (BMGO) Behavior Management services through the Indiana Medicaid Waivers. SBS is a proud member of the Indiana Behavior Association. www.IndianaBehaviorAssociation.com

What are Behavior Management Services: Behavior Management is deﬁned as the support of individuals, across their lifespan, that are experiencing behavioral, social, or emotional challenges while accessing and actively participating in community life, in all environments. Behavior Management is intended to help individuals achieve independence, self-determination, integration, and inclusion while focusing on social skills, communication, daily living skills, and job competence. This service is designed to empower individuals as well as their families by utilizing their strengths and abilities to reach their personal goals. Behavior Management Services can be training, supervision, and assistance in appropriate expression of emotions, needs and desires, assertiveness, acquisition of socially beneﬁcial behaviors, and the reduction of undesired behaviors. Behavior consultants may support individuals to improve the use of coping skills during periods of anxiety or transition; or they may support someone to develop desired social skills. Behavior consultants may support individuals to develop effective advocacy skills, to learn necessary tasks such as maintaining employment, following a toilet training program, chore charts, completion of self-care and hygiene tasks, moving from a desired activity to undesired activity, and so many more. Behavior consultants may also provide support for an individual to express their emotions, desires, needs, or wants effectively and healthily.

Supportive Behavior Services Does Not: Utilize highly restrictive employment covenants such as non-compete clauses (often disguised as “non-solicitation” clauses) that will later stop your family from receiving services from your chosen clinician. Stop nor impede families from following their chosen clinician if their clinician were to leave SBS for any reason.

SBSMain2020@gmail.com • www.IndianaBehaviorAssociation.com • www.SupportiveBehaviorServices.com Special Needs Living Indy

FEATURED FAMILY

MEET THE

FA M I LY BY MARIA SMIETANA • PHOTOS BY 21 VINES PHOTOGRAPHY

Fifteen years ago, Julie and Adam Funk made the decision to move their family from Crown Point to Fishers, IN. Their son Jason, who is on the autism spectrum, was two at the time, and their goal was to raise him in a place that had the resources he 42

November 2023

needed, particularly verbal behavior therapy. “One of our happiest memories came after Adam and I went to a weekend verbal behavior seminar and came home and taught Jason how to sign for ‘on’ and ‘milk’ in a matter of minutes,” Julie recalled.

“Prior to this, he had not been able to communicate at all. We were ecstatic, and that event prompted our move to the Indianapolis area.” The decision turned out to be a good one. Not only did Jason, 17, make his way through school—he’s now a

Despite his genius-level IQ and achievements that surpass many of his neurotypical peers, it hasn’t been an easy road for Jason.

senior at Hamilton Southeastern High School—he learned to speak! “We didn’t know if he would ever speak,” Adam said. “Now he’s an engaging public speaker. We are proud that he is publicly sharing his story about having autism and his challenges and strengths. He is a great ambassador for the autism community.” There have been many milestones in Jason’s life that his parents recount with pride. Starting school was a big one. “Other happy times were when the therapists would bring him to the car and show us what he had learned that day, and more recently when he got his

learner’s permit,” Julie said. On top of that, Jason is a black belt in taekwondo and publishes a bi-weekly comic and essay on his website, funkworldhq.com. He has published two comic books, The Bus Seat, and The Merchant of Misfortune. Jason’s first graphic novel, Burger Quest, came out in August 2023. His books, blog, and speaker inquiry form can also be found on funkworldhq.com. Despite his genius-level IQ and achievements that surpass many of his neurotypical peers, it hasn’t been an easy road for Jason. He still has challenges with executive functioning in school, and while he can speedread his way through the twenty or so books he checks out on every trip to the library, he has a tough time making friends. “None of his milestones were ever taken for granted and that holds true for future milestones,” Julie said. “He sees a behavior consultant weekly and has an IEP at school.” Giving Jason the best chance at reaching his potential while also assuring that his younger siblings, Allison, 16, and John, 13, weren’t shortchanged meant that Adam and Julie had to make some tough calls. Julie, a Purdue alum who went on to earn an MS in physical therapy from the University of Indianapolis, decided to be the full-time at-home parent. Adam, also a Purdue grad,

is the income-earning parent. He’s a pharmacist at CVS, which often requires working evenings, weekends, and even some holidays. “We gave up our free time and my career to be available for the kids, Julie said. “And with most of our family back in northwest Indiana, Adam and I rely entirely on each other for support. Adam’s work schedule constantly changes, so holidays like

Special Needs Living Indy

Thanksgiving are celebrated with just our immediate family.” Having some routine in their family life helps the Funks maintain stability and reduce stress. As Catholics, they attend church weekly, and they focus on leisure activities that they can all enjoy. While Jason’s interests are more limited than those of his siblings, visits to Top Golf and water parks are two things that appeal

November 2023

to all the kids. They also added River to the family, “a rescue dog who loves everybody,” Julie laughed. “She is, of course, the very best dog.” Travel time takes the Funks to Holiday World every year. They’ve also been to Gatlinburg, and historic places like Mount Rushmore and Washington, DC. Florida’s Destin is their favorite beach spot. “We split up when we have to so that all three kids can enjoy the vacation,” Julie said. “This is particularly true in amusement parks since Jason doesn’t like rollercoasters, and the same is true for beach destinations—he’s not a huge beach fan.” Like many teens, Jason has a long list of favorite fast-food places, including Aurelios, Culvers, Marcos, Five Guys, and Dairy Queen. He loves cheese pizza, burgers, chocolate ice cream, and his mom’s spaghetti. Interestingly, Jason doesn’t listen to music, but he’s a big fan of Dr. Who and the Mandalorian. He likes to play video games, especially Super Mario Brothers. As Jason moves into adulthood, Julie and Adam are especially thankful to The Behavior Analysis Center for Autism for supporting

Jason on his journey. Their biggest wish is that companies in the Indy area would provide professional, well-paying career opportunities for individuals on the autism spectrum. For families looking for a place to raise a child with disabilities, Julie is very positive about Fishers - “It is a great community with a lot of resources and activities for those with special needs.” And when it gets tough to raise a child with differences, she encourages parents not to give up. “Pray. Find an outlet. The sun always rises.”

You deserve an agent that is supportive, understanding, and compassionate. Nicole Lyon is here to guide your family with your real estate needs, every step of the way.

I am proud to serve the special needs community. My career is Real Estate my PASSION is helping others with their goals and dreams. I am humbled and honored to work in the real estate industry.

Are challenges in moving holding you back from finding your next home? • Availability to work with your schedule • Daily research of the market including new construction • Setting up showing apts based on your schedule • Give you the time you need during each showing • When you find the right home I am here every step of the way and even after your close

Call today so we can talk more about ways I can help your special needs family find your next home!

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Call me today at 317.501.0639 Special Needs Living Indy

SP ONSOR SP OTLIGHT

AUSOME INDY

usome Indy is a volunteer led, public nonprofit providing life changing access to resources for children and families with autism in Indiana. Supported by the generosity of individual donors and small businesses, we provide sensory tools, safety and communication equipment, sensory events and experiences, and a safe space for mothers and caregivers to find friendship, support and resources. Ausome Indy was co-founded by my sister Ellen Miller and me. As we were growing up in the 1980s, our mother taught special education for Indianapolis Public Schools. She was one of the first in Indiana to serve as a Guardian-at-litem (GAL). GALs are individuals who advocate for a child in court proceedings. She was also a foster parent to over a dozen children.

November 2023

Our mother was diagnosed with progressive supranuclear palsy, a rare brain disease, and passed away in 2016. My son, Beau, was diagnosed with autism in 2017 at the age of two and a half. As our family processed his ASD Level 3 diagnosis, we felt our hearts drawn to the many children and families in Indiana who are living at or below poverty level, experiencing unpredictable life transitions such as foster care or kinship care, and the complexity of challenges that accompany keeping a child with autism safe and nourished under those circumstances. As a tribute to our mother’s love for children, her relentless pursuit of the safety and reunification of troubled families, and in celebration of the way Beau perceives the world, we launched Ausome Indy as an official 501c3 organization in 2019.

We currently offer the following program services: • Ausome Kiddo Referrals individualized sensory support for children. • Sensory Kits - small, portable fidget kits for children to use at school, in meetings, during transitions, etc. • Ausome Experiences and Events - sensory spaces inside DCS offices and sensory friendly events for the public. • Ausome Moms - connecting and supporting moms and caregivers of children with autism. We know that children with autism are nearly three times more likely to be in foster care, and they often have longer stays in the system, more housing transitions, and less reunification with family. Here in Indiana, our foster care

system is in crisis – with over 10,000 children in foster care and less than 6,000 foster homes available. Children with autism need unique care that considers their sensory sensitivities and needs, a daily routine, and for many, 1-1 supervision at all times. Gaps in state and federal services often leave these children without critical resources they need to selfregulate, find comfort, and establish routines. When a case manager or foster parent contacts Ausome Indy, they are in desperate need of immediate resources for a child. We are able to fulfill referral requests within 48 hours. We provide communication devices, sensory kits and tools, adaptive seating, weighted blankets, safety equipment and other items as requested. In short, we help Indiana’s most vulnerable children with resources that have a big impact on their ability to communicate and thrive during unpredictable and often traumatic life transitions. After nearly five years of serving the autism community, we found that connection provides a great sense of empowerment and support for mothers and caregivers. Often, families with special needs children find themselves attending fewer and fewer community events and social outings. This can be due to the child’s behavioral issues, the unkind reactions of strangers, the need to pack special food or gear, and many other factors. For children with autism, sensory overload is also a real concern. Ausome Indy provides Ausome-friendly events that encourage families to connect, celebrate and share new experiences in a safe space, and enjoy activities they already love with one another. Ausome Moms, a group for mothers and caregivers to find connections, share resources and support, and celebrate their ausome kiddos together, was launched this year. Ausome Moms offers sensory friendly events, activities and social outings for moms, virtual connection meetings, and support and care packages for moms of newly diagnosed children. The more moms that join this group, the more we can form mentorships, friendships and community partnerships to grow a space for mental health and well-being

for mothers and caregivers of children with autism. To learn more or to join go to ausomeindy.org/moms. Ausome Indy is the official ambassador for Autism Travel Club, a national network of autism-ready businesses that have committed to providing staff training to serve families with autism. Recent CDC statistics show that 1 in 36 children will be diagnosed with autism. As the prevalence of autism continues to increase, we know that an even greater number of children will have a sibling or family member who has autism. Ausome Friendly Indy is dedicated to creating a growing network of “ausome friendly” places for families to enjoy. Life with autism is unpredictable. Many children and adults with autism live with sensory processing issues that make sounds, lights, smells, crowds and environments challenging to tolerate or navigate. Communicating discomfort can be difficult or impossible, resulting in meltdowns as a form of communication. As a result, families often opt to stay home rather than venturing out, leading to decreased quality of life for all the family members. Ausome Indy proactively reaches these families, and those who plan to travel to Indy, with a network of safe, welcoming and accommodating, “ausome friendly” places for their family to enjoy. Learn more or join our network at ausomeindy.org/ausome-friendly. One of the greatest lessons we have learned while carrying out our mission is that connection between families with special needs is critical to providing hope, dignity and a more

Inspire Autism is driven by a family dynamic that fuels their passion and dedication. healthy and positive life experience for the family. As parents of children with autism, we are lifelong players in this community and finding friendship that offers a safe and welcome space to share, learn and grow together can alter the trajectory of a child’s life and that of their family members. The best advice we can give is to find joy in connecting with others in the community and lean on each other for resource support, understanding, and hope. Sharing your life (and the life of your child(ren)) with others is a gift and it also takes vulnerability – we hope to encourage a community that embraces connection and encourages sharing and celebration of our families. Ausome Indy (317) 331-2434 www.ausomeindy.org Special Needs Living Indy

NEW HOPE OF INDIANA THE PLAY PROJECT BY MADDIE BULKLEY COMMUNICATIONS AND ENGAGEMENT SPECIALIST

or many children with autism, early intervention is critical to helping improve their social interaction and repetitive self-isolating behaviors/interests. However, many parents don’t know what help is available and which programs would be best for their child. To help provide solutions for families in our community, New Hope of Indiana offers the PLAY Project. The PLAY (Play and Language for Autistic Youngsters) Project is an evidence-based, parent-mediated autism intervention model. According to the program’s website, playproject.org, the PLAY Project was developed by Richard Solomon, MD, a developmental behavioral pediatrician with over 25 years of experience working with children

November 2023

who have autism spectrum disorder (ASD) and their families. This early intervention program is targeted to children 18 months to 6 years of age who have autism, display signs of autism, or are otherwise neurodivergent. It’s designed to change a participant’s life course while their brains are still developing at a fast rate. Headquartered in Ann Arbor, Michigan, the PLAY Project now has over 500 certified and licensed PLAY Project consultants and is implemented in 35 states and 9 countries. The PLAY Project methodology uses play as a form of therapy. According to New Hope Licensed Behavior Therapist and Certified PLAY Project Consultant, Terri Gee, children are more likely to actively participate in therapy if

it is something they love doing, and fun and play are at the heart of everything the PLAY Project does. Different from many other early intervention methods, parents are included in their child’s sessions, which usually consist of two one-to-two-hour sessions per month. These sessions are recorded so that the consultant can review and give parents individualized training, coaching and support based on their needs and the needs of their child. Parents are given a list of activities to engage in with their child in between sessions with the consultant. As a result, parents are able to bring home the skills they learn to further their child’s progress. PLAY Project consultants encourage parents to conduct at least 10-15 hours per week of active engagement tactics for the best results. This program’s high level of intensive intervention between parent and child at home, combined with the sessions with the PLAY Project consultant, contributes to the program’s effectiveness. The PLAY Project can be a cost-effective form of intensive autism intervention because parents put in many hours of engagement themselves. Additionally, the FSW and CIH Medicaid Waivers offer behavior services, and the PLAY Project can be funded through these means. Self-pay is also an option. New Hope of Indiana is proud to participate in the PLAY Project and has two certified PLAY Project consultants on staff. Terri Gee is a huge proponent of the PLAY Project’s methodology in early autism intervention. Here is what she says about the program: “I have worked with The PLAY Project since 2017 and I have seen many children develop and progress in communication, thinking and problem-solving techniques, fine motor skills, and social skills, which in turn, provides a bright, optimistic future for children and families. The PLAY Project’s early autism intervention teaches the parents/ caregivers how to PLAY and follow their child’s lead helping to promote growth and development while diminishing the communication gap between the child and caregiver.” Terri has had the privilege of working with numerous children and their families over her years as a PLAY Project consultant. Time and time again, she has witnessed children making tremendous progress and reaching new milestones thanks to the PLAY Project. Terri currently serves siblings Mino and Miyun through New Hope’s behavior therapy program. When Mino was younger, he and his mother, Christina, participated in the PLAY Project with Terri. Mino was able to drastically improve his communication and problem-solving skills. Mino’s mother said this regarding their experience with the PLAY Project: “PLAY Project is a person-centered approach that helps with independence and social skills. My kids are aware of the positive reinforcements, and they know the difference between good and bad choices. This program helped my son with his communication. Without the PLAY Project, Mino would not be verbal. He would grunt and point and now he is comfortable using his words.”

According to a research article from the medical journal Frontiers in Psychiatry1, the demand for early autism intervention services is higher than ever. The article states that as of 2021, 1 in 54 children in the United States are born with autism. The PLAY Project can help address this increased need for services. If you are interested in learning more about the PLAY Project offered by New Hope of Indiana, please contact Amy Flint, Director of Community and Family Connections, at aflint@newhopeofindiana.org or Lonya Thompson, Behavior Services Manager, at lthompson@newhopeofindiana.org. 1Aranbarri, Aritz, et al. “Examining US Public Early Intervention for Toddlers with Autism: Characterizing Services and Readiness for Evidence-Based Practice Implementation.” Frontiers in Psychiatry, vol. 12, 2021, https/doi.org/10.3389/fpsyt.2021.786138.

Special Needs Living Indy

Searching for Answers BY V. A. WEST

efore I can delve into my visit with Vanderbilt’s Undiagnosed Disease Network clinic in Nashville, Tennessee, a lot of context is needed. Explaining my story leading up to this point is important; maybe someone reading this could relate and try this avenue like I did. I have a long and complicated medical history. I have an unknown pain disorder (which has forced me to use a cane for over four years), bile-acid malabsorption, free-running circadian rhythm disorder, insomnia, sensory issues, generalized anxiety, social anxiety, depression, memory issues, complex post-traumatic stress disorder, and a multitude of other minor health problems. I have to micromanage my everyday life in order to walk, drive, spend time with friends/family, and do anything else “normal” people do. I have been receiving disability benefits since I turned twenty, and I’ve never been able to work or go to college. In my twenty-four years of life, I’ve already had more procedures (colonoscopies, endoscopes, all other GI tests, gall bladder removal,

November 2023

kidney stone removal, bowel obstruction, etc.), tests (blood, urine, stool, MRI, ultrasounds, CT scans, traditional x-rays, sleep studies, etc.), and medications (well over four dozen) than most people will in their entire lives. All of this is only scratching the surface; my diagnoses, test results, and other stuff do not explain why my everyday struggles are so severe. After trying everything I could, the Vanderbilt UDN accepted my case, and my last chance for answers or solutions has been put into their hands. The process began in September of 2021, with the actual appointment happening on August 24, 2023. In that two-year time frame, blood tests were sent by myself and my mom. Between that time and the time of my appointment, various paperwork was sent, and many calls and emails were exchanged; it was exhausting. I probably had to communicate more in the final month leading up to the appointment than I did during the previous twenty-two months (travel arrangements, things I needed to do the night before I arrived, COVID

questions, etc.). Communication was generally great, but those last few weeks were frantic, and I was bombarded with emails and calls until the day my mom and I left. The drive was around five hours, which was very hard on my body. Even though I wasn’t the one driving, my health situation made staying in one place for a long time very taxing. This was also during a notable heatwave between August 23 and 25th. On August 24th the day started at 7:00 am and we wouldn’t be back at the hotel until after 4:00 pm. During those nine hours, I had appointments with a geneticist, a neurologist, and an internal medicine specialist; I also had two blood tests, two urine tests, and a skin biopsy. The entire day was probably the most physically and mentally exhausting of my entire life, but it was worth it and I’m mostly satisfied with what happened. My appointment with the geneticist, the first doctor I saw, was where I received the most important information. He gave me the results of the genome sequencing, a complex test that analyzes DNA and tries to

find commonalities and abnormalities based on a set list of parameters (which include symptoms, diagnoses, and other things). My results were, as I expected, inconclusive; I didn’t find any answers or solutions during my visit. I did, however, receive a degree of validation I’d never experienced before. I moved past the concept that my overall health situation was “all in my head” years ago, yet I know how “impossible” it sounds when I explain everything. I was given information that essentially proved me right; I have between one and three diseases, which are either extremely rare or unnamed. The geneticist found 10-20 mutations in my genes which need to be isolated more in different ways. It’s sad, but being proven right about the severity and complexity of my situation brought me so much joy; I guess it meant more hearing it from an expert. The best part of going there, to me, is that my work is done; their group of doctors (who each specialize in different fields and work together) will continue to reevaluate and work on my case for years to come. They don’t need any more blood work or additional tests done; I only have to communicate to them if anything changes. The Vanderbilt UDN, in terms of my overall time there, was wonderful. It was probably the best hospital experience I’ve ever had and I was lucky enough to have possibly the world’s best nurse; I don’t make either of those statements lightly, especially with my medical history. The buildings were very clean and the air-conditioning was great; I could tell all three of my doctors were good at their jobs and openminded (when you’ve seen dozens of doctors who study in various fields, you eventually get a sense of intuition about them). Transportation, food, and the hotel were all paid for through their research grants. I would highly recommend going there if they’ll take your case. My thoughts and feelings regarding the most important medical appointment of my life changed over the years. At first, I promised my mom I would go, on the condition

that it would be my last time dealing with most doctors, and with the hope that my mom, at least, could find some answers. I didn’t have much hope or optimism, but I was still determined to see what would happen and I wanted any answers I could get. In the final months leading up to August 24, things changed. I had begun hormone-replacement therapy and was right in the middle of my gender transition (and the staff at Vanderbilt were great with my name and pronouns; I’m very grateful); in July, I put a lot of effort into sorting out the doctors I needed to see semiregularly. Avoiding doctors entirely was never going to be possible; however, limiting my appointments and taking as many precautions as

possible is best for my emotional health. More importantly, I had grown strong enough, emotionally, to realize I would attain happiness no matter what Vanderbilt could or couldn’t find; I no longer needed answers to continue pursuing my best life or my best self. Yes, everyday living is still very difficult, but between my selfgrowth and my support group, I’m certain I’ll end up attaining the things I want most (no matter how short or long my life ends up being). Everyone deserves to be happy and healthy; everyone deserves to receive support, validation, understanding, and love from the people around them. You are not defined by your medical issues, and you are not alone. No matter what the future holds, there is always hope. Special Needs Living Indy

November 2023

Special Needs Living Indy

9151 Currency St. Irving, TX 75063

Special Needs Living Indy Nov 2023 Digital Issue

Articles inside

Searching for Answers

NEW HOPE OF INDIANA THE PLAY PROJECT

SPONSOR SPOTLIGHT: AUSOME INDY

MEET THE FUNK FAMILY

SELF ADVOCATES

MAKING A DIFFERENCE

NONPROFIT SPOTLIGHT: Epilepsy Foundation of Indiana

Children With Disabilities Deserve Love and Family Too

Sensory Blurb! Cubby Bed

Beyond writing for handwriting ….

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