TO GET THE DIGITAL COPY OF SNL THROUGH TEXT MESSAGE, TEXT THE LETTERS SNL TO THE NUMBER 55433. INSIDE: • An Open Letter to Lawmakers and Those in Positions of Power • Adult Achievers: Meet Jamey Row • Meet the Howell Family • The ABCs of IEPs • Defying the Odds: Sean Toth’s Story • Nonprofit Spotlight: Wabash Center Inc. • Sponsor Spotlight: PEAS for Kids • Pastor’s Corner: Spiritual Wellness 1.1 • Local Events and More MEET THE HOWELL FAMILYRob, Meredith, Lola and Sebastian Photos by 21 Vines Photography SEPTEMBER 2022
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. We are the largest indoor adventure park in Indiana, with 50,000 square feet of attractions, including our ALL NEW ropes course, warped wall, stunt fall, all sports course, harnessed climbing wall and MORE!! Sensory Friendly Play every Monday from 11:00 a.m. - 4:00 p.m. Call or email to reserve your spot! More than a Trampoline Park 10080 E 121st St Suite 182 Fishers, Indiana 46037 events@adrenalineadrenaline317-572-2999shers1.comshers.com
September 20224 317-977-2375 317-676-4222 800-609-8448 877-241-8144 800-545-7763 800-545-7763 800-622-4968 888-673-0002 800-403-0864 317-232-7800 317-925-7617 877-511-1144 317-466-1000 Arc of Autismwww.arcind.orgIndianaCommunity BlindAutismwww.autismcc-in.orgConnectionSocietyofIndianaandVisuallyImpairedServices (BVIS) Bureau of Developmental Disabilities Services (BDDS) Bureau of Rehabilitation Services (BRS) Deaf and Hard of Hearing Services (DHHS) DisabilityDHHSHelp@fssa/in.govDetermination 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 https://eastersealscrossroads.orgCrossroads 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. IMPORTANT NUMBERS INSOURCEFirstEmergencySteps – 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 Indiana(GPCPD)Resource Center for Autism Indiana State Department of Health Indiana Statewide Independent Living Council (INSILC) Indiana UnitedSpecialSocialSocialMedicaidMedicaidINSOURCEWorks–http://insource.org/DisabilityWaiversSecurityAdministration(SSA)SecurityDisabilityInsurance(SSDI)EducationQuestionsCerebralPalsyAssociationofGreater Indiana Vocational Rehabilitation Services (VR) 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 800-772-1213 800-772-1213 877-851-4106 317-871-4032 800-545-7763 Scan or text the letters SNL to the number 55433 — to get the digital copy of SNL through text message Scan to view the past issues of Special Needs Living Delivering Neighborhood Connections © 2022 The N2 Company, Inc. n2co.com
September 20226 This section is here to give our readers easier access when searching for a trusted neighborhood partner to use. Get to know the businesses who 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 ABA SERVICES Autism Center for Enrichment (317) 436-7080 BehaviorWorks ABA (317) 731-7777 Mindful and Modern ABA Therapies (317) 827-7777 Piece by Piece Autism Center (765) 481-2261 The Umbrella Center (463) 701-0909 ABA/COMPREHENSIVE SERVICES The Hope Source (317) 578-0410 ACCOUNTING/PAYROLL/TAXESBorshoffConsultingLLC.SherryBorshoff (317) 902-6539 ADVOCACY/EVALUATIONSPEASforKids (920) 980-1172 HostetterATTORNEY&Associates (317) 852-2422 ATTORNEY-WILLS/TRUSTS/ESTATEPLANNING Law Office of Elizabeth A. Homes LLC (317) 660-5004 CASE ConnectionsMANAGEMENTCaseManagement (317) 440-0637 IPMG - Indiana ManagementProfessionalGroup (866) 672-4764 CAT CARE & SITTING Bastet Cat Care & Sitting (317) 919-1948 CBDIndySUPPLIERCBDPlus (317) 961-0191 COUNSELING SERVICE Mark 2 Ministries (317) 777-8070 DAY / BEHAVIORAL SERVICES Developmental Disabilities Systems INC. - DDSI (317) 477-8240 DENTAL CARE Children’s Dental Center (317) 842-8453 ELECTRICAL SERVICES 21 Electric (317) 449-0021 FINANCIAL Charter Advisory Corporation David Yearwood (317) 844-7416 Munder Financial James Munder (317) 238-6621 WestPoint Financial Group Gordon Homes (317) 567-2005 FUNCTIONAL MEDICINE Wholestic Nutrition (317) 429-0111 GYMNASTICS Body by GymRoots Studio (317) 579-9300 HEALTH & WELLNESS LifeVantage - Team Richards Kristin Richards (317) 698-5264 HOME CARE Amiable Home Care Inc. (317) 802-1746 HOME CARE SafeInHomeSERVICES (855) 476-6665 INDOOR TRAMPOLINE PARK Adrenaline Family Adventure Park (317) www.adrenalinefishers1.com572-2999 INSURANCEStateFarmJohnCole (317) 430-1958 INVESTMENT MANAGEMENT Dan Claxton Investment Advisory & Broker Dan Claxton (317) 250-8080 LANDSCAPING/LAWN CARE/ LANDSCAPE LIGHTING Franco Landscaping, Inc (317) 858-3858 CrossCountryMORTGAGEMortgage (317) 666-4679 MUSIC THERAPY Dynamic Music Therapy (317) 829-6654 Resounding Joy (858) 888-0899 NEUROFEEDBACK THERAPY Indy Neurofeedback (317) 888-8500
Special Needs Living - Indianapolis & Surrounding Areas 7 PARKS & RECREATION Johnson County Parks & Recreation (812) 526-6809 PEDIATRIC THERAPY Wee Speak (765) 446-8300 REALTOR Carpenter Realtors-Jeremy Page (317) 413-5311 F.C. NicoleTuckerLyon (317) 501-0639 REGENERATIVE MEDICINE/ STEM CELL DestinationTHERAPYReGen (317) 522-1980 DynamicSCHOOLMindsAcademy (317) 578-0410 Midwest Academy (317) 843-9500 SCHOOL - SPECIAL NEEDS The Fortune Academy (317) 377-0544 SCULPTURE, POTTERY & ART Ripple Mobile Arts (317) 514-8469 SENSORY SPACES Corporate Interior Solutions (317) 691-4156 SUPPORT SERVICES Easterseals Crossroads (317) 466-1000 Noble (317) 375-2700 The ALTRUIST Group, LLC (317) 547-3041 x1005 Wabash Center (765) 423-5531 THERAPY & TESTING SERVICES The Brain Center (317) 748-0034 VIDEOGRAPHY/PHOTOGRAPHYDeliverVideoEliWalker (765) 602-1046 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. 317-748-0034 braincenteratgeist.com Neuropsychological Testing Forensic/Legal Evaluations Psychotherapy & Caregiver Consults CogMed Training Animal-Assisted Therapy Psychotherapy for children, adolescents and adults.
September 20228 W e H e a r Y o u r S O S ! Mental Health Counseling Speech Therapy Family Guidance Occupational Therapy Indy & Terre Haute Clinics Children, A dolescents, Young A dults with A SD & R elated Needs R each out at asdheartsos. com Outpatient Services for Individuals & Families HeartSOS A nxiety, Depression, A ttachment, PTSD & R elationships Self A dvocacy, A rticulation, Feeding, A praxia & R elationships Executive Functioning, A DLs, Sensory Processing & R elationships Social Communication, Emotional R egulation, Flexible Thinking & R elationships
Special Needs Living - Indianapolis & Surrounding Areas 9
Aaron Olson DeAndra Yates Matt KnightPaul ChristinaHathcoatMcGairk Editor and Writer WRITER & CONTRIBUTORS Special Needs Living TEAM MEET THE Angelica N. Gray, MA, BCBA, LBA Sheila Wolfe Dorie Zipperle ISAAC ROMAN Writer and Photographer KENDAL FORD Kendal Nicole Photography CHRISTIE AND NATHAN BUONANNO Buonanno Photography JANE GAILEY Event Manager HEATHER GREGG Photographer 21 Vines Photographyy JAMIE MCCABE Publisher & Area Director MARIA SMIETANA Editor-in-Chief ANGIE ARLINGTON CommunityCoordinatorEngagement/WriterandContributor CHRISTIA WOODFORD Publishing Assistant and Local Events BROOKE RUSSELL Operations Contributor
Special Needs Living - Indianapolis & Surrounding Areas 11
September 202212 NICOLE 10WWW.TALKTOTUCKER.COM/NICOLE.LYONNICOLE.LYON@TALKTOTUCKER.COMLYONNORTHFIRSTST.,ZIONSVILLE,IN46077 Call me today at 317.501.0639 Schedules are important and oftentimes transitions can be more challenging for special needs families. Looking to move?
The Bible reveals that “the Lord gives strength to His people; the Lord blesses His people with peace” (Psalm 29:11). I myself have been a recipient of this peace. It has helped carry me through times that I would not wish on my enemies. It has guided my decisions and actions. It has helped me to feel unexpected unity with the world around me and has helped me develop acceptance of the things that I cannot control. Peace can be a huge benefit to the pursuit of spiritual wellness. For the parent or caregiver of someone living with a disability, it can be a lifeline to balance and renewal. I pray for peace for you today. Renewal. Why is renewal important? We all get worn down. Many of us tend to focus on the negative, even unintentionally. Studies show that people who report having low spiritual health and wellness also report feeling anxious, frustrated, empty, and wrestling with thoughts of self-judgment, loss of meaning and hopelessness. Those who report having good spiritual health typically display hope, a positive outlook, forgiveness, commitment, joy, and a clear sense of self-worth and purpose. Renewal opportunities often come in the form of connectedness and quiet. It is time to stop doing and just be once in a while! Having close friends and confidants leads to renewal. Carving out quiet places and spaces to meditate, pray, relax and be still, lead to renewal of both the inner and the outer. Spiritual health allows renewal to happen regularly. I pray that you have renewal in the days ahead. If you are engaged in the spiritual wellness process, keep at it. If not, why not start today? Why not pursue meaning? Why not seek peace?
Meaning. What is life without meaning? I say, a spiritually healthy person most often has a definitive purpose and established meaning in life and can reflect on that context despite the events and situations they find themselves in. They also often have a distinctly defined idea of right and wrong and are able to act accordingly when presented with difficult decisions in life. Moving through life with meaning can produce peace. In a world that doesn’t always show favor to those who exercise these qualities, it is that much more important to pursue them. I pray that your life has meaning.
Spiritual Wellness
1.1
Peace. What can a peaceful existence do for us?
And for the love of all that is good and worthy, why don’t we all create space in our lives for renewal? I am not the president of the “Spiritual Wellness” club, mind you, but I did preach at a Holiday Inn Express last night. All jokes aside, I hope to inspire you and challenge you readers out there to seek this pillar of priority in your life. Seek your spiritual nature and find places and spaces where your loved ones living with disabilities can be supported while doing the same. I think what you will find is … strength and rest. God bless!
Do you have a thought, idea, or information that you would like to see in this section in an upcoming issue? Email Paul Hathcoat at phathcoat@wrcc.org.
One of my previous article topics has continued to come up in my life and the life of those around me. If you recognize it from a previous edition, then kudos to you. If not, please read through carefully, assess your own “wellness” and reach out to someone you trust to join you in a journey toward a balanced and ever-growing spiritual life. It is truly the foundation of my life and the prescription that Jesus gives us, especially in times of struggle. No matter what age you are, or what stage of life you are in, living a well-rounded and balanced life has been proven to increase your life span and to greatly increase the quality of those years within it. Why am I, a pastor, writing about this in a Special Needs Living magazine article? Well, because a crucial aspect of whole life health is spiritual wellness. In this article, I would like to make a case for you to begin, evolve or pass on to the next generation the wisdom and benefits of making your spiritual health a priority in their lives and the lives of the people living with disabilities around them. What is spiritual wellness? There is a general understanding of this idea which points to seeking one’s core values and purpose. There is also a more Protestant definition that embodies a life lived in devotion to the teachings of Jesus Christ. Whatever our core beliefs are and whatever purpose we are chasing, are we reserving time and space in our lives and the lives of those in our care to work toward a balanced and whole spiritual life? I have some thoughts and a list of benefits that may encourage all of us to take the time to reinvest in this life priority.
pastor’s corner
By Paul Hathcoat
September 202214 Visit ripplemobilearts.c om/sp e cial-ne e ds-art-class es or call 317-514-8469 Inclusive & Adaptive Art Experiences for your whole family to enjoy! In-Home or In-Studio Classes • Affordable • Inclusive • Adaptable • Pers onal • Creative ddsi-in.com • info@ddsi-in.com • 317-477-8240 5999 W Memory Lane Greenfield, IN 46140 MAKE CHOICES • GAIN SKILLS • CUSTOM EXPERIENCES Give us a call today to learn more about being involved. Adult Day Habilitation • Behavior Services Participant Assistance & Care Allison M Charette, Ed.S. Nationally Certified School Psychologist Founder, PEAS for Kids (920) 980-1172 • allison@peas4kids.comwww.peas4kids.com forPEASKids 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 BUILDING FOR A BRIGHTER FUTURE! www.21electric.net@21Electric.net 21 Electric was created in honor of our son, Brody, who has Down Syndrome. Family owned operated& • Full-service electrical contractor • Licensed, bonded, & insured • 100+ years of combined experience • Residential & Commercial services • Stocked service vehicles ready to go Contact us today at 317-449-0021
Special Needs Living - Indianapolis & Surrounding Areas 15 (317) 919-1948 | bccs95@gmail.com Serving the westside of Indianapolis, Avon, Brownsburg, Plain eld, Zionsville Accommodating all feline family members including special medical & behavioral needs. TeachingBASTETCATCARE&SITTINGandGivingInjections,Medication,NailTrimsandMinor Indy Neurofeedback is Changing Lives! Do you or someone you love suffer from ADHD, Anxiety or Autism? Let Us Help You Explore Your Options. Schedule a consultation today! 8801 N. Meridian, Suite 306, Indianapolis, IN 46260 (317) 888-8500 • www.indyneurofeedback.com "We followed the same path most of the other autism parents do with GFCF, DAN Dr., supplements, HBOT. What really made a difference in our son’s attention span, executive processing skills, and anger management was neurofeedback through INDY Neurofeedback and Leanne O’Neil." ~Maria S. Neurofeedback(parent)isanon-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. FINANCIAL and TAX ADVANTAGED Services to help manage ordin ary and tax advantaged invest agement, or savings for healt h events is available. Claxton Financial Group, LLC (317) 250 8080 dclaxton@claxtonfinancial.com a registered investment advisor, memb er FINRA/SIP C
“Since 1953, Wabash Center has been providing services in support of our mission to optimize the quality of life for children and adults with disabilities or special needs,” shares Jason McManus, Chief Executive Officer. Wabash Center comes from humble beginnings. The origin of the organization can be traced to a core group of families with children who had special needs. Discouraged by the lack of resources and options available to them and others like them they placed an ad in the Journal and Courier in 1952 seeking other families dealing with the same challenges. It was an attempt to find strength in numbers and to create services where none existed before. “Today, Wabash Center has grown into a comprehensive service provider for those with disabilities or special needs that is leading the way to supporting individuals in their pursuit of quality of life for them and their families,” Jason explains. Wabash Center offers services covering the full continuum of needs: from school-aged children newly diagnosed on the autism spectrum to older adults and nearly everything in-between. This includes after-school and summer programming for children and young adults, day programs, employment services, community-based staffing and support, transportation and residential“Wabashservices.Center prides itself on providing the right amount of services and supports at the right time to meet the needs and challenges that those we serve and their families face, including helping families navigate the complex process of applying for the Medicaid Waiver, transitioning from school to young adulthood, and finding and maintaining meaningful employment.”
Highlighted Services:
September 202216 nonprofit spotlight
By Angela Arlington
• Youth services located at Grant’s House: • After School • Emerging Adults • Camp 54 • Employment Services: • Job coaching and follow along • Interview preparation • Disability benefits • Rights counseling Angela Arlington –Contributor–CoordinatorEngagementCommunityWriterand
Wabash Center Inc.
Special Needs Living - Indianapolis & Surrounding Areas 17
– Mayor Tony Roswarski, City of Lafayette
• Community Stewardship: • Guardianship Services: providing guardians to assist the most vulnerable in their time of need.
“Wabash Center also serves the Northwest Indiana region in Lake, Porter, Jasper and Newton counties through a satellite office located at 11055 Broadway, Condo C Crown Point, Indiana 46307. From this location we provide Supported Living and Family Supports services that offer individualized supports to maximize independence. These services include Supported Living, community integration activities, transportation and respite. In addition, we offer a summer program, Summer Adventures, for school-age individuals up to age 22,” Jason explains. Wabash Center has helped individuals and families throughout the years. “It takes a community, including friends, advocates, natural supports and volunteers. Anyone interested in participating in our mission of service can learn more at www.wabashcenter.com.” community really can’t go overstated. All of us probably know somebody in our family whose lives have been touched by Wabash Center over the past 65 years – I know I personally have.”
September 202218
Special Needs Living invites you to join parents and caregivers of special needs individuals for a day of encouragement and connections No matter where you are in your journey, we invite you to join us. This is put on by parents and caregivers for parents and caregivers. The goal of this day is to take you from surviving to thriving. There will be personal stories shared, round table discussions, and many connection opportunities available throughout the day. Mom and dad perspective, self-care and mindfulness, perspectives from parents with young kids, teen kids and adults with special needs. Breakouts for how to sustain your marriage while raising a child with special needs. How to find your tribe and support in the special needs community as a single parent or caregiver. A panel breakout for how to best navigate through the waiver for kids and one for parents who have adult kids on the waiver. We will have a message to talk about how to thrive and easy-to-do mindfulness activities throughout the event. We will end with a Food Truck Social, where everyone is welcome to stay, grab something to eat and continue to connect with people from the event. This event will be in person. We will have virtual options available. The event is free thanks to White River Christian Church, Special Needs Living and the supporters. We hope to see you there. We hope you leave feeling like you can thrive and that you have a community with many connections, resources, and support!
SPECIAL NEEDS
EMPOWERMENTLIVINGDAY
Date and time
Special Needs Living - Indianapolis & Surrounding Areas 19 save the date
WhiteLocationRiver 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.
tickets-358772416957empowerment-day-special-needs-living-eventbrite.com/e/https://www.
Attention Attention Calling all Parents & Caregivers of Special Needs Individuals.
Saturday, Sept. 17, 2022 1 p.m. – 5 p.m. EDT
Hope to see you there!
General admission into Conner Prairie: On Sept. 10, purchase General Admission tickets to spark your curiosity as you explore the grounds of Conner Prairie and encounter programs and experiences dedicated to the innovation and science of flight, from 10 a.m. 5 p.m. Jupiter Flights balloon glow: Sept. 9: Join us in kicking off our spectacular weekend filled with hot air balloons! From 6 p.m. 10 p.m. watch as the balloons fly on target and enjoy live music from Stella Luna and the Satellites from 6:15 p.m. 7:15 p.m. Stay for our evening balloon glow featuring bounce houses and fun activities for the whole family. Sept. 10: Come back to the Prairie from 6 p.m. 10 p.m. and enjoy a new set of balloons as they fly on target. This special evening features live music from Toy Factory from 6:15 p.m. 7:15 p.m., bounce houses and activities for the whole family. Cap the night with a balloon glow featuring colorful balloons from around Indiana and beyond. Exclusive to the festival! Experience our new Headless Horseman corn maze before it opens to the public.
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. 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.
https://www.connerprairie.org/ jupiter-flights-balloon-festival/ Sensory-Friendly Hours
Various events
Sept. 1 through 30 13400 Allisonville Road, Fishers, IN 46038 Phone: 317-776-6000 or 800-966-1836 https://www.connerprairie.org/ events/list/ Sports Indianapolis Colts
The Children’s Museum of STEMIndianapolisExploration Day Sept. 10, 2022 Time: 10:00 a.m. 3 p.m. Sunburst Atrium Discover the girl power that changed science and history forever! Learn from women in various STEM professions including paleontology, chemistry, and engineering. Explore their work with hands-on activities, talks, and demonstrations. Collect STEM giveaways while supplies last. Fiesta de la Familia: A Celebration of Latin American Cultures Sept. 25, 2022 from 10 a.m. 3 p.m. Join us for Fiesta de la Familia as we honor children and celebrate Latin American cultures. Free programming is available throughout the museum. Live music in the Sunburst Atrium. Free activities showcasing folk art from different Latin American countries. Learn from local organizations. Various Events Sept. 1 Sept. 30 Opens at 10 a.m. 3000 N. Meridian St. Indianapolis, IN 46208 317-334-4000 https://www.childrensmuseum.org/ visit/calendar?date=01/08/2022
Important Note: Prior to attending any events, please be mindful of any Covid-19 restrictions. Please review the state mask executive order. There are exemptions within the order, including that children under 2 years of age should not wear a face-covering due to risk of suffocation, and any person with a medical condition, mental health condition, or disability that precludes wearing a face covering is not required to do so. 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 listed details in case event details have changed since posting.
Conner Prairie Indiana’s Living History Museum Jupiter Flights Balloon Festival Sept. 9 11 7:20 a.m. 9 a.m. 10 a.m. 5 p.m. 6 p.m. 9 p.m. Free events: Sept. 10 and 11: Join us at dawn to cheer on your favorite balloons as pilots fill the sky in exciting competitions, with a grand champion announced after Sunday’s final race!
Museums
y
B Christia Woodford
September 202220 LOCAL EVENTS
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.
The second Sunday of every month, from 10 a.m. to noon, will be 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.
Sept. 25 Kansas City Chiefs Lucas Oil Stadium 500 S. Capitol Ave.
https://www.lucasoilstadium.com/ Indy Eleven Sept. 3, 10, 17, 25, 28 Carroll Stadium, Indianapolis, IN https://www.ticketmaster.com/ indy-eleven-vs-new-york-redindianapolis-indiana-05-21-2022/ event/05005C3FBFB5483D
Indianapolis, IN 46225
All IN Music & Arts Festival
Special Needs Living - Indianapolis & Surrounding Areas 21
Indianapolis Indians Sept. 13, 14, 15, 16, 17, 18, 19, 20, 21, 22, 23, 24 Victory Field, Indianapolis, IN https://tickets-center.com/search/ Indianapolis-Indians-tickets/ Family Fun
The Arts Beef and Boards Escape to Margaritaville Aug. 18 Oct. 2 9301 Michigan Road, Indianapolis, I N 46268 317-872-9664 https://www.beefandboards.com/ Online/default.asp Jubilate Choir Butler University, Lilly Hall, Room 133 Wednesdays, 6:45 7:30 p.m. Director: Lauren Southard Start Date: Sept. 22, 2021 For more information, contact Lauren Southard at 317-940-8065 or lsouthar@icchoir.org. Gigi’s Playhouse Various classes during the week. 5909 E. 86th St. Indianapolis, IN 46250 317-288-8235 indy@gigisplayhouse.org Needs Living Distillery North Our events are every Tuesday in September: 6, 13, 20, and 27. The hours of operation are 4 :30 p.m. 10 p.m. 120 Camilla Ct (behind the car dealership) Westfield 46074 Lu Dog’s Grilled Dogs will be there every week. Mini Sweets will be there on the 13 and 27. Becky the Bakester will be there on Sept. 20. We will have a 50/50 and a raffle every week. Musical entertainment each week and fund raiser cocktails.
Sept. 3 Sept. 4, 2022 Indiana State Fair Grounds 1202 E. 38th St., Indianapolis, IN 46205
Join in the dawn of a new Midwest tradition. The All IN Music & Arts Festival is excited to bring an exceptional festival experience to the heart of Indianapolis, kicking off the inaugural event with a limited-capacity boutique experience unlike anything before. The perfect blend of great music, great food, and great drinks, the All IN Festival will feature a curated selection of local food and beverages, a giant beer garden with local craft breweries, cocktail bars, and more. From the sounds of Motown soul to classic rock roots, from the pop hits of the ‘80s to the boisterous Americana of today, the All IN lineup is made up of the most beloved artists of all time. These are the artists and the songs we all love!
1205
https://www.indianastatefair.com/ events/2022/all-in-music--arts-festival
Gigi’s Playhouse 3.21 Run 1 Mile WalkKids Dash For Down Syndrome Saturday, Sept. 10, 2022 Starts at: 2 p.m. EST Ends at: 6 p.m. EST Forest Park, 701 Cicero Road, Noblesville, IN 46060 Ready! Get fit! Build a team! Build more acceptance for kids and adults with Down syndrome! We can’t wait to run, walk, dash and celebrate with you! This family-friendly afternoon event will be rockin’ with new friends, returning families, great food and music, and huge hearts! Don’t miss out! Your generous donations will fund new programs like GiGiFit, existing programs like LMNOP, Preschool Prep, GiGi U, a new phonics curriculum for vital programs like 1-on-1 Literacy Tutoring, and more! acceptance-challenge-2022/event/ indianapolis-in Various events scheduled everyday https://gigisplayhouse.org/ indianapolis/sfcalendar/ Autism Community Connection (ACC ) Trivia Night (Greenwood) Sept. 10, 2022 | 6 p.m. (doors open) | Moose Lodge Greenwood 13 Smith Valley Road, Greenwood, IN 46142 Our annual fundraiser, Trivia Night is a great night of fun playing trivia with friends, having a delicious meal, vying
https://support.gigisplayhouse.org/gigifit-
If your cubs dream of one day becoming a veterinarian, this event is for you! Stuffed animals can be important members of the family, too! So bring in your favorite teddy bear or stuffed animal for a checkup. Learn how to care for your plush friends and get a Certificate of Beary Good Health from one of our Zoo veterinarians. Plus, meet members of our animal care team and find out what it takes to keep our whole furry family healthy. This event is just for Zoo members and there’s no RSVP required! Just drop into the clinic inside the Ascension St. Vincent Dolphin Gallery anytime between 9 and 11 a.m. Various events are scheduled daily Check the calendar for events.
Indianapolis Zoo Teddy Bear Clinic
https://www.indianapoliszoo.com/visit/ daily-schedule/ 1200 West Washington St. Indianapolis, IN 46222 317-630-2001 HOURS: 9 a.m. 5 p.m. Mon.-Thur., and 9 a.m. 7 p.m. Fri.-Sun. and holidays. 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
Events Special
Sept 10, 9 11 a.m. Ascension St. Vincent Dolphin Gallery
https://autismcc-in.org/event/ acc-trivia-night-greenwood-2
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Family2FamilyFamily2Family is hosting a virtual workshop on Government Benefits, Guardianship and Employment. Sept. 12 Register at training@f2f.org Indiana Resource Center for Autism’s 2nd Annual Virtual Autism Conference Sept. 22, 2022 Join us for the IRCA’s second annual Virtual Autism Conference! Speakers will address a range of topics relevant to those across the autism spectrum and across the age span. Hosted by the Indiana Resource Center for Autism. This conference will feature keynote speakers Jed Baker, Ph.D., and Brenda Smith Myles, Ph.D. In addition to our keynotes, we will have a variety of breakout sessions addressing a range of topics relevant to those across the autism spectrum and across the age span. Topics include behavior, practical educational strategies used in schools, mental health and ASD, adults with ASD panel/presentation, social skills, executive functioning, transition planning, adult services, and more. For more details and registration, visit: https://www.iidc.indiana.edu/irca/newsand-events/irca-autism-conference.html
https://whova.com/portal/registration/ hthc_202209/
Cost is $90 USD for participants, $50 USD for family members and individuals, and free for first presenters. Special Needs Living EmpowermentParent Day Sept 17, 1 5 p.m. 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. No matter where you are in your journey, we invite you to join us. This is put on by parents and caregivers for parents and caregivers. The goal of this day is to take you from surviving to thriving. There will be personal stories shared, round table discussions and many connection opportunities available throughout the day. Mom and dad perspective, self-care and mindfulness, perspectives from parents with young kids, teen kids and adults with special needs. Breakouts for how to sustain your marriage while raising a special needs child. How to find your tribe and support in the special needs community as a single parent or caregiver. A panel breakout for how to best navigate through the waiver for kids and one for parents who have adult kids on the waiver. We will have a message to talk about how to thrive and easy-to-do mindfulness activities throughout the event. We will end with a Food Truck Social, where everyone is welcome to stay, grab something to eat and continue to connect with people from the event. This event will be in person. We will have virtual options available. The event is free thanks to White River Christian Church, Special Needs Living and the supporters. We hope to see you there. We hope you leave feeling like you can thrive and that you have a community with many connections, resources, support! Sept. Sept. 24, 11 a.m. 2 p.m.
we provide families across
they can
or
Greenwood Library 310 S. Meridian St. Greenwood Food Trucks Interactive Acivities Vendors Raffles Sensory Room Over 45 agencies. Questions? info@connections-in.com https://fb.me/e/1K445g|7H
September 202222 for special raffle baskets, and raising money to support those affected by autism in the community! Must be over 21 years old to attend.
The 2022 Heart to Heart Conference
Connections Case Management, Hometown Waiver Solutions, and Outward Bound Support Services Resource Fair Sept. 10th, 2022, from 10 a.m. 1 p.m. The Knights of Columbus at 809 E Main St. New Albany CCM will be hosting, and our hope for this event is to provide community resources to Floyd, Clark and surrounding counties for families and individuals with disabilities. We will be having an interactive area for music therapy and recreation therapy, hopefully. We would love for your organization to be a part of the event and have a booth. Is this something you would be interested in? The cost will be free to attendees and vendors. We are asking for each booth to raffle off an item of their choice for the event. If there is someone specific in your organization that I need to speak with, please let me know and I can contact them directly. The link to register is https://forms. office.com/r/U2BZxG4Jen.
Hope to see you there! https://www.eventbrite.com/e/ special-needs-living-empowermentday-tickets-358772416957 Indiana Walk to Defeat ALS Saturday,
24, 2022 Walk Check-in: 9 a.m. Walk Start: 10 a.m. Celebration Park Indiana State Fairgrounds 1202 E 38th St. Indianapolis, IN 46205 Avery Smith avery@alsindiana.org 317-601-3718 https://secure2.convio. net/alsa/site/TR/Walks/ Indiana?pg=entry&fr_id=15120 Second Annual Southside Disability and Resource Fair Greenwood Public Library, Connections Case Management, Inspire Case Management and Putnam County Comprehensive Services Saturday,
Sept. 29, 2022 The conference is once again virtual. Heart to Heart was created to provide families and caring children youth with additional education a language understand. As parents of children with additional understand the unique challenges face and consider Heart to Heart an extension of the one-on-one support Indiana.
health or
Special Needs Living - Indianapolis & Surrounding Areas 23 2100 S Morgantown Rd Greenwood, IN www.jocoparks.com812.526.680946143 Follow us on @injocoparksFacebook!@jocoind • All Inclusive Playground Remodeled in 2020 featuring an Interactive YALP & Sona Arch • 3 Rentable Shelters • Wheelchair Accessible Trail with JCPL Storywalk • Wheelchair Accessible BasketballParkIndependenceCourt-aplacetoPLAYforALL Remote Supports E m p o w e r i n g p e o p l e w i t h d i s a b i l i t i e s t o l i v e i n d e p e n d e n t l y i n t h e i r o w n h o m e s a n d c o m m u n i t i e s u s i n g R e m o t e S u p p o r t s FOR PEOPLE WITH DISABILITIES 1 855 476 w6665 ww.safeinhome.com Scan Me Family Supports Waiver (FSW) and Community Integration and Habilitation Waiver (CIH). @AmiableHomeCareinc 317-802-1746 • amiablehomecare.org 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
September 202224 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
By Sheila Wolfe – IEP Services
Many parents experience frustration when their child with special needs does not make progress at school. Case Conference Committees often spend hours discussing what a child should learn but not how a child should be taught. Special education is not supposed to be a guessing game.
THE ABCs OF IEPS
“Best practice” (or “effective practice”) is a vague term that does not necessarily indicate something is backed by scientific research. More importantly, “best practice” does not indicate that the practice has evidence of improved student outcomes. Often “best practice” boils down to the curriculum the school corporation has chosen for that subject and grade for that school year. After two years of using that program, another “new and improved” program could be introduced based on nothing more than a great sales pitch from an established educational publisher. Hype surrounding programs and approaches in education are often backed by popularity and not by science. Think about evaluating educational practice the same way you evaluate medical practice. If you have a headache and have heard through friends and social media that peppermint oil is great for relieving a headache, you may give it a try. Maybe it helps the first time, but over time its effectiveness is very unpredictable. You treat your next headache with pain relieving medication like acetaminophen, and it continues to work every time. Peppermint oil can be an effective treatment for getting rid of a headache, but that finding is anecdotal, not evidence-based. There isn’t highquality research to provide evidence of its effectiveness. Instead, the use of peppermint oil for headaches is validated by social media, companies that sell it, and people you know. I advise the parents I work with to do their own research on different programs and instructional techniques designed to teach students comparable to their own. The What Works Clearinghouse https://ies.ed.gov/ ncee/WWC is a fabulous resource for families. It allows you to search based on age/grade, skill area, and disability.
Look for programs and
If parents raise the question of how a teacher intends to instruct a student, the answer is often, “We use best practices for all of our instruction.”
Special Needs Living - Indianapolis & Surrounding Areas 25
Schools are required to use evidence-based practices when teaching students requiring special education.
Cook, Smith, and Tankersley (2012) define evidence-based practices (EBPs) as practices that are shown to be effective through high-quality research to meaningfully improve student outcomes. Simply, EBPs are practices that are supported by a strong, highquality evidence base to have a positive impact on student learning. You rely on your doctor to know which medication to prescribe to improve your health. Parents should also be able to rely on their school/ teacher to use a methodology or curriculum that has shown, through data and research, to have a meaningful and positive impact on student learning in a particular subject/skill. Parents have a right to review the research behind any program, methodology, or curriculum used by the school to see if it is backed by high-quality evidence to have a meaningful, positive impact on the learning of students with your child’s particular disability and/or needs.
theiradvocateofwhichinformationtothetheevidenceprograminformationyourwithprogram’sandwrittenwilland/ortosimilarbasedspecificforforeffectivedisability.effectivehaveapproaches/methodologieseducationalthatresearchshowingthattheyareforstudentswithyourchild’sAreadingprogramthatisinimprovingreadingfluencyatypicalchildmaynotbeeffectiveachildwithdyslexiaorautism.Bepreparedtosuggesttheuseofprogramsthatareresearch-andeffectiveforstudentstoyours.Iftheschoolrefusesdiscusstheeducationalapproachcurriculumprogramtheyusewithyourchild,submitarequestfortheinformationtheresearchwhichsupportsthateffectivenessforstudentsyourchild’sdisability/needs.Ifschoolrefusestoprovidetheorcannotbackupthewithresearchthatprovidesofeffectiveness,youhaveoptiontofileacomplaintwithstateDepartmentofEducationcompeltheschooltoprovidetheandtouseaprogramisevidence-based.Thisisonethemostimportantwaysyoucanforyourchildtoimproveeducationaloutcome.
NationalReferences:Center on Intensive Intervention. https:// CEEDARintensiveintervention.org/Center:WeProvide Opportunities to Learn for Teachers and Leaders. http://ceedar.education.ufl.edu/ What Works Clearinghouse: Find What Works! https://ies. Evidence-Baseded.gov/ncee/wwc/Intervention Network. Vanderbilthttp://ebi.missouri.edu/University:Special Education Resource Project. what-are-evidence-based-practices/https://my.vanderbilt.edu/spedteacherresources/
My 19-year-old son, Will, has severe cerebral palsy and autism. He is nonverbal, non-ambulatory, and intellectually disabled. He has had 39 surgeries or procedures in 19 years. Despite all of those challenges, Will remains a joy seeker. He is smart, funny, and has brought more joy, purpose, and change to this world than most neurotypical individuals can in a lifetime. In the 15 years my son has had access to home health care nursing, we have never been fully staffed. Home health care staffing has always been problematic – long before Covid.
I don’t know if the nurse who is coming is an LPN, an RN, a BSN or something else. I don’t know their age, their capabilities, or whether they are interested in working with pediatric patients and individuals who are both medically fragile and intellectually disabled. I don’t know if they have ever seen a Baclofen pump or know how to change a g-tube. Should they know? Of course, but we have had nurses who had no experience with either. The nurse just shows up on day one. They are trained by my husband or me or by another nurse on the staff, and then they decide if they want the case. This is after they have been in our home, asked personal questions about ourselves and Will, and participated in the bodily and emotional examination and care of my son. After all of this, they choose.
In my 31 years in education, I have never been able to choose my students. I educate and take responsibility for them while they are in my care. In my husband’s 23-year military career, he didn’t get to choose his missions, who he served under, or where he served. He served his country. And you, the lawmakers, have never been able to choose your voters or constituents. You are elected to serve. Clearly, some members of the public are better served than others, as evidenced by Christmas
September 202226 AN OPEN LETTER TO LAWMAKERS AND THOSE IN POSITIONS OF POWER
One problem is that nurses who are employed at home health care agencies can choose their own cases. They are allowed to read about, or hear from the agency scheduler, the following critical information about my son: his full name, age, where he lives, how he lives, where he goes to school, his detailed and intimate medical history that explains and explores every part of his body and brain that works or doesn’t. In addition, the nurses are told our full names and address, who we are, what we do, how we live, if there are other children or pets in the home, if our home is clean, and what equipment we have access to in ourWehome.–the family – are usually told nothing about the nurses before they arrive. Sometimes we get a first name, and sometimes we don’t – but never a last name. I asked about that once and was told it was to protect the nurse’s identity. The nurse can choose to share their last name, but are not obligated to do so, or to tell us anything aboutIronic.themselves.Inaday and age where we are told to not share our children’s last names and photos to protect against predators, and adults are told not to share too much information because of identity fraud, we, the families of children and adults who require home health care, are required to do the opposite.
By Dr. Darolyn “Lyn” Jones, Mother, Disability Advocate, Life-Long Educator
Yes, families also have a say. If the family doesn’t think a nurse is a good fit, they can express their concerns to the agency. However, more than once, my husband and I have been told that if we don’t take the nurse who is willing to take our case, the agency won’t be able to find anyone else, at least not in a timely manner. Or the agency will disagree with us and insist the nurse is a good fit. This message comes from a scheduler with no medical background, and the message isn’t inferred; it’s clear: Take this nurse or get no one. The agencies relay the opposite message to the nurses. Why? Because the agencies have more patients than nurses, so they can easily move nurses to another case and still be reimbursed and make their money.
Special Needs Living - Indianapolis & Surrounding Areas 27 the inequities we see in Indiana and around the country.
WillChristmasandDad playing
In the last five years, nursing staffing has become even worse for my family and other families like ours –again, long before the Covid pandemic. Staffing has been impacted by multiple factors: low Medicare and Medicaid reimbursements, not enough nurses to cover the growing number of health care facilities, not enough educators to teach nursing students, not enough hospitals that can provide the required hands-on clinical training for nursing students, and nurses leaving the field because of burnout or inadequate pay or benefits. Look it up if you like, or talk to anyone in healthcare. They will validate everything I wrote. Home health care always suffers the most staffing shortages because the pay is typically less than that in medical facilities. Add to this that our son was growing up, and his health was becoming progressively worse. He wasn’t as “cute” or “able” and not as easy to handle physically. He struggled with orthopedic and stomach pain, which made him easily upset. Because of his intellectual disability and limitations in the frontal cortex of his brain, plus the onset of puberty, he struggled with how to process that pain and those emotional reactions to pain and other confusing cues that surrounded him. He knew what his body used to do, and now he couldn’t do it anymore. He didn’t understand all of the surgeries, the therapies, and this progressively challenging life. And he didn’t understand who was coming next to care for him and what was happening around him. Imagine being extremely dependent, scared, confused, and unable to communicate. His emotional reactions were warranted. He required more care and more empathy and assurance from his nurses. When the pandemic was gaining momentum in early 2020, I had a phone conversation with Will’s pulmonologist, and we agreed that Will shouldn’t go to school. Then a week later, the shutdown happened. At this time, we only had one nurse two days a week for eight hours. But the agency was always “looking” for nursing for us. My husband and I, now working from home, made the difficult decision to pause nursing because we were worried about the nurses being exposed to Covid and passing it on to us. Masks weren’t yet required for home health nurses – we were told they were working on that decision. We had kept our son alive for 17 years. He had suffered a lot and nearly died more than once. I wasn’t going to risk losing him to Covid until we had a better understanding of what was happening. Our intention was that we would return to nursing soon because, like everyone else, we thought the pandemic would soon be over. It wasn’t. For six months, my husband and I somehow managed to work from home, teaching and meeting online – something we had never done before – all while managing our son’s intensive medical care, therapy, and school/learning needs. School was not available for him online like it was for neurotypical students. The Free and Appropriate Education (FAPE) did not apply to him at all. There are many lawsuits now from families like ours outraged at the inequities and lack of education that students like my son received during Covid. We were our son’s caregivers, educators, and entertainers as we remained locked up inside. At the same time, we were also managing care for our elderly parents. In late August of 2020, we knew we would have to bring in some help. Now that we had learned how to teach and meet online, the expectation was that we would resume an aggressive work-from-home schedule. I had Will at the park
First day back to school after two years
And because I don’t want to be my son’s nurse. I want to be his mother. I’m a better teacher because of Will, my greatest teacher. I want him home. He’s my child. Would you give your child away? Would you trust a nursing home to take care of yourWechild?have a national health care crisis. We have a national caregiving crisis. I am hearing over and over from families with adult children who have lived successfully in group homes or independently with facilitation but are now moving back home or being removed from institutional care. People like Will are the most vulnerable population, but they are being left behind. Statistics already support how Will and Dad doing therapy
September 202228 managed to get some education services set up for Will online. But the agency said no nurses were available.
Every time we are told there is no one to help or that a nurse doesn’t want our son’s case, I feel like pieces of my skin are being stripped off my body. The skin protecting and holding my body together becomes raw, bleeding. And the skin can’t regenerate fast enough to cover the area until it’s stripped again and my bones are exposed.
Our former nurse had been reassigned to another family during our pause, and the company had lost 25% of its workforce to clinics and hospitals managing the hundreds of daily Covid cases in the greater Indianapolis area. But they assured us they would keep trying to find staffing, just as they had for the last 14 years. The promises became a meaningless mantra. I would ask myself, did they really intend to find someone? Yes, I think they tried. They recruited new hires. They looked at nurse caseloads to see who had open days. But care is triaged; priority is given to patients with greater medical needs and with less help at home or for families with disabled or aging parents or guardians. I was even told by our agency that suburban patients are harder to staff because of the distance from the urban areas where many home health care nurses live. There is also the perception that suburban families are “higher maintenance” and have higher expectations for their child’s caregivers. I found this insulting on multiple levels because all parents love their children and have high expectations for their care, regardless of zip code. Assuming otherwise is discriminatory and inflammatory. I have been protecting and caring for my son for 19 years; I won’t let anyone who isn’t qualified take care of him. A parent of a neurotypical child wouldn’t allow it either. Yes, I have had unqualified nurses who have harmed my son. One nurse left him unattended in a vehicle. I could have reported the agency to the police but was told it would make it harder for them to staff us. I knew that was true. At the time, they were considered the best pediatric home health care agency in the area, so I let them handle it internally instead of pursuing charges. They had me painted in a corner. Another nurse broke my son’s ankle. He didn’t strap his feet in correctly on his wheelchair, caught his foot on a curb break and snapped his ankle. I could have forgiven that, but then he tried to cover it up, and my son sat in pain for three hours until we got home. Sadly, I have more stories I could share. As with any profession, there are good and bad nurses. We have been blessed to have more good than bad nurses, but a bad one can do some very serious damage – to a person’s life, to a family’s trust, to a family’s anxiety about allowing someone else in. And in our son’s case, the good ones too often leave to make more money elsewhere or to care for their own families. In August of 2020, we finally contacted the one paid caregiver who has helped fill in when there are no nurses. She only worked four hours a day, Monday through Friday. It was all we could afford. She was careful, mostly remaining in her house or ours, and was always double-masked and washed her hands religiously. Still, she had college-age children. Both of her children did get Covid, but somehow, even though she was around them, she did not. Nor did she give it to any of us. A miracle, a God thing, call it what you will. After we were all vaccinated, everyone breathed easier, and I asked the agency if we could again resume services, but the answer was the same. Finally, in July of 2021, our agency had one nurse who could come one day a week and some weeks, two days a week. She was very nice and tried hard, but I still had to assist her. Two weeks later, she quit, telling me she had an opportunity to work with a younger patient who does horseback riding therapy and that sounded like more fun to her than working with Will. I said nothing. I just nodded. Will doesn’t understand why nurses don’t return, nor why they aren’t there. And I can’t explain it to him in any way he can understand. They leave knowing my home, what’s in it, who we are, and with private medical information about my child. Every time, I’m angry and hurt. I have to be Will’s body, his voice, his emotions. I have had to speak and advocate for him to explain why he is sad, upset, tired, or happy.
I’m asked why I don’t quit working and take care of my son full time. Or why not put him in a facility? But it’s not that simple. My salary covers more than just our out-of-pocket care for him. It contributes to paying all our bills and the things not covered by private insurance or Medicaid.
Our health is declining alongside those we care for. And our children are struggling and hurting. My son is worthy of as much education and care as anyMychild.sonand families like ours deserve and demand your attention. Come to our homes. See how we live. See what is required. Reach out to me. Let me explain and share more with you. Take this up as a cause and help families like us advocate. And most importantly, move legislation forward that assists families like ours. Will and Dad Will in his standerWill and Grandpa Will and Mom
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disproportionately medically fragile children and adults die when under a non-family member’s care. What will happen to Will as my husband and I age? We have no other children and no extended family to care for him. This is a question that all of us in this position ask. And what will happen now? His school classroom doesn’t have enough help to fully support him because, at this writing, the district has 27 special education paraprofessional positions open. We send him to school, but with four wheelchair users in the classroom and only one nurse, learning takes a backseat to the frontline care required.
At Destination Regen we can help replenish what the body needs to naturally repair its self with the life changing power of Regenerative Medicine.
I always say to my students that if you are going to critique something, be prepared to argue for a solution. So, I will do the same. Pay nurse educators more. Change the nursing school system to make it easier for interested candidates to gain admission. Pay health care workers more per hour. Let families have a say and a choice in who takes care of their loved ones. With the Aged and Disabled Medicaid waiver we have, we are required to use an LPN, an RN, or a BSN. We can’t hire a home health aide. Ironic, since my husband and I are not medically trained, nor are the private caregivers we hire. We have been trained to care for him. We have trained others. Let me find my own help and use Medicaid dollars allotted to him for those individuals.
With the Family Support Waivers (FSW) and Community and Integration and Habilitation Waiver (CIH), families can hire their own help or even pay themselves as caregivers. Now that my son is an adult, I can be paid a small amount per hour to care for him, but I can’t choose my own help and have them paid through the 60 hours of nursing care his Medicaid waiver provides him. If you know of a family like ours, help. Help us. Ask what you can do to give us a break or make our lives easier. We are struggling and hurting.
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Living as an Adult With Disabilities Sean was able to go to college at Vincennes University and live on Sean and some of his former football teammates from Warren 50th birthday celebration! With his mom and friends Sean and his aide Adria Johnson Sean and and his aide Adria Johnson at the State Fair
DEFYING THE ODDS:
National Activist
Sean Toth’s Story
In the 1990s, Sean became an activist. Having endured so much pain, he wanted to ensure that others had the tools to fight chronic conditions. Inspired by research into cannabis, he traveled the nation as a medical marijuana activist. At that time, Sean says he was the only medical marijuana activist in a wheelchair. He spoke to thousands of people about the need to legalize medical marijuana. His campaigning took him to large events and many small rallies, festivals, campuses, and more in states including nearby Michigan and Wisconsin. His activism efforts have been featured in High Times Magazine, USA Today, IndyStar, NUVO, and local cable access shows. He also is an advocate for those with disabilities. Sean has spoken to students at local schools to share his story with others about living with disabilities. It’s his hope that those speeches helped young people understand his struggles and be kinder to those in the disability community.
September 202232
By Lauren Carpenter
When Sean Toth was 5 months old, he started getting his teeth, but then they fell out because there were no roots. That was the first sign that something wasn’t right. There were others that followed. Doctors were at a loss, but didn’t think the outlook was good. Fiftyfour years and 346 surgeries later, Sean has completely defied those odds. The near-Eastside Indianapolis resident spent years in and out of hospitals before doctors at the National Jewish Hospital in Denver formally diagnosed him. His disease is similar to Hereditary Dysnomial Neuropathy Type IV, a rare genetic disorder that usually begins in infancy and is characterized by an inability to feel pain and an inability to sweat. Sean also has an inability to fight infections. But his symptoms don’t completely fit that disease’s description, making what he does have an orphan disease, a rare disease that affects fewer than 200,000 people. “There were a lot of trips to the doctor’s office and the emergency room,” said Sean’s mother, Marnee. “Sean couldn’t feel pain, so he would hurt himself and would need stitches. Unlike other children, he didn’t learn not to put his hand on a stove or lean on a hot car, because it didn’t hurt.” When first diagnosed, not many people knew Sean had a disease because his disabilities were not visually noticeable. After so many surgeries over the years, often caused by infections that wouldn’t heal, most of Sean’s limbs have now been amputated and he is 80% blind. But that hasn’t stopped him from living his life to the fullest!
Sean is a big sports fanatic and has done sportswriting for Inspin.com, show prep for Jon Chelesnik at ESPN radio, and several jobs at KCAA radio.
“I got tackled out of bounds and got right back up … I was a legend then!” Sean says. “I got credited with an assisted tackle and I hold the state record for most tackles in a wheelchair!”Despitehis illness, the coaches expected Sean to make it to every practice, game, and event, and he did.
Going Beyond Expectations
“Well, it hasn’t all been bad and although I have had my challenges, I bet that there are a billion people who would trade their life for mine,” Sean said. “It’s not been dull and I think that I have done much more good than bad.”
Sean says he was the first person in a wheelchair to receive a letter in an Indiana high school sport – football. He has researched it and believes he is the first in the United States, as well. Sean was on the Warren Central football team as a manager but also got involved in the action one time when quarterback Jeff George threw a pass to Kipp Koonce.
And despite all of these setbacks, Sean still tries to lead a productive life as much as he can. He has decided whatever he does in life he will be giving back to the world however he can. One way he is able to fulfill this desire is through his latest project: digitizing video tapes. Out of the 5,000 tapes he has bought, he has digitized more than 3,000 of them! Among them are hours of MTV broadcasts from when the channel actually showed music videos. He doesn’t take any money for the digitizing and makes the broadcasts
Advice for Those in the Disability Community Sean has several pieces of advice for others living with disabilities. He encourages them to live as independently as possible and to never stopAlso,trying.he understands it can be hard to find good, reliable home staff and is thankful to have his team. He encourages others diagnosed with rare diseases to be patient with their helpers, spend time getting to know them, and even surprise them with a treat every once in a while. He also says to let your caretakers know you are there for them, as that makes a huge difference. Caretakers spend so much of their time being there for others, so he knows they need others to be there for them as well. He also makes sure to listen to music every day and watch comedy to keep his spirits high. Sean believes in pet therapy and has had his current cat for 21 Despiteyears!Sean’s mixed feelings about his future, he said he will never give up.
“Life was a constant struggle. But I was so proud of myself,” Sean said. “I knew my purpose and I was living the life that I was brought up to live.”
Special Needs Living - Indianapolis & Surrounding Areas 33 his own for two years. Then, for 21 years, Sean lived independently in housing owned by the U.S. Department of Housing and Urban Development (HUD) with the help of home health aides. As the building’s first resident, he felt very comfortable there and loved spending time with his neighbors. He could live life like everyone else – keeping his refrigerator stocked, using the bathroom, heating up food in the microwave, taking a bath, and more. One of his favorite activities was hosting NFL Sunday parties each week during football season. Living there, he said he had many meaningful roles that made his life feel whole. “I was the person everyone came to for a friendly ear, shoulder, even a mediation or tech support,” said the computer hobbyist. “I literally have hundreds of stories of those days and the people I met through living there.”
He also wants society to understand that no matter who you are, how much money you have, or even how careful you are, anyone can become disabled.
Sean now requires a lot of support and lives at home with his mother. He has to receive help for each and every task. Kim has been Sean’s nurse for 28 years and sees him throughout the week.
“They all know that I am there for them as much as they are here for me.”
“Digitizingpublic.tapes is something that everyone can benefit from. My tapes go around the world the first hour I drop them,” Sean said. “My favorite part is that my efforts will be making people happy long after I’m gone.”
TK, an 83-year-old man from Uganda, has been his aide each and every day for 17 years. Adria has been his homemaker for eight years and sees him three times a week. He says Adria is his rock, and respects her hard work as she has earned three degrees, works two jobs, and is an amateur fashion model, all while being a Seanmom.wants all three caretakers to be a part of his story as they play a huge part in his life. He also wants to thank the great medical professionals at Riley Hospital for Children and IU Health. He says his loyalty is the way he has maintained such great helpers.
“I stick around for everyone who still wants me around and work very hard to keep me going,” Sean said. “I vowed to never abandon anyone.” Every day, he beats the odds. Sean connects with the world through his computer Sean with former football teammates Kip and Jeff Sean and Marnee Toth
“We want to work, and we want to be a productive part of society,” Sean said. “It kills us to take up so many resources. I don’t feel that I have put nearly as much into the world as I take out.”
Sean considers himself a people person and used to always surround himself with so many people. Now, he describes his loneliness as gut-wrenching.Theideaof relying on the government for healthcare weighs heavily on him, but he is very grateful for all of the help he receives. He wants those who do not have chronic diseases to know how people with rare diseases feel.
He has also written several pieces for a book that he would love to put together for others to read someday.
Sean is also thankful for his mom’s constant love and support, as she has been there for 342 of his 346 surgeries. She only missed those four because she had to travel to say goodbye to a close family member before their death. Sean says she has always been a great mom. The last several years have been very hard on him, as he cannot enjoy life the way he used to and has to completely rely on his caretakers.
Tell us a little about them. We have two dogs, Gidget, a Boston terrier, and Dude, a rescue Lab mix from Indianapolis Animal Care Services. We decided we needed a Covid puppy, so we brought Gidget into our home. Shortly after, we adopted Dude, who is just a puppy. It’s been nothing but chaos, but my kids, especially Lola, love both dogs. Dude is a big lover, and Lola needed an animal like that in her life. She can lay all over him, and he welcomes it. He calms her, too. We also have a 250-gallon fish tank that came with our home, so we have fish as well.
Do you have pets or service animals?
If you have a special needs adult living at home, are they employed or attending a special services program?
Lola (11) attends Kitley Intermediate, which is in Franklin Township on the southeast side of Indy. She is in the fourth grade and takes part in an essential skills class. Thankfully, Franklin Township has been very supportive of Lola’s educational needs. In addition to the support she receives in the classroom, she receives blind/ low vision services, orientation and mobility instruction, speech therapy, and occupational therapy. She hasn’t been in school for very long as she was enrolled in Applied Behavior Analysis (ABA) therapy for several years. The transition into school has been really positive, though, and I’m proud of how well she’s done.
SebastianLolaMeredith,Rob,and
Photos by 21Vines Photography What are your family members’ names and children’s ages? Where do your children go to school, and does/ do your special needs child/children attend school and/or receive other educational/behavioral services?
September 202234 Howell
Where are you and your family originally from? I’m originally from Battle Creek, MI. I moved to Indianapolis after I graduated from college. My husband is from the southern part of the state. We lived in Costa Rica (where Lola was born) for three years, then came back to Indianapolis once we realized the extent of Lola’s health challenges. Where do you live in Indiana? How long have you lived here? What brought you to Indiana? We live in Franklin Township, which is on the southeast side of Indianapolis. We have lived in our home for about a year and a half. I was living in Kalamazoo, MI, when I graduated from college. My mom brought me to Indianapolis for a girls’ weekend, and I loved it. I moved here a month later without really knowing anyone, and that was about 17 years ago. It’s been a good experience living in Indy though I miss the water that Michigan provided. As I mentioned, Rob and I moved to Costa Rica for three years. We ran a medical recovery retreat for people recovering from surgery. My parents meet the family
My son, Sebastian (8), is in the second-grade REACH class at South Creek Elementary, also in Franklin Township. Last year both of my kids attended Adams Elementary, and I was pleased to see how accommodating they were to my kids and their needs. Here I had Lola, who was the oldest child in the school, with perhaps the most significant learning needs, and they could provide great instruction to her. Then I had Sebastian, who was at the top of his class academically –needing additional challenges for an enriching school experience – and they provided that, too. I feel lucky that our school experience has been so positive thus far.
One milestone that sticks out is when she started walking. She was 3 years old before she became stable enough to walk, and she worked so hard at it. So to see her achieve this milestone was amazing. Now we can’t keep up with her – we need her to slow down a bit! Also, I would say hearing her talk. I remember asking one of her teachers if she thought Lola would ever talk, and she said yes, that Lola would talk someday. ABA therapy really helped pull language out of Lola. At the age of 11, you would never know that she
Special Needs Living - Indianapolis & Surrounding Areas 35 owned a bed and breakfast right next door, so that’s why we moved there. We enjoyed our time in Costa Rica and eventually started our family there. Lola was born in January 2011. She began having seizures when she was 4 months old (infantile spasms) and was diagnosed with cortical visual impairment at 7 months of age. Just before she turned a year old, we made the decision to come back to Indianapolis. We knew she would need medical care and therapies, and we didn’t know if Costa Rica could provide that level of care. So we had to start all over when we moved back. Rob stayed home with Lola so she could get all of the therapies she needed, and I started working. We’ve been back in Indy for about 10 years now. It was a whirlwind experience! What have been some of the challenges you/your family have experienced, and how have you overcome some of these struggles? One of our biggest challenges was getting a diagnosis for Lola. We went to countless doctors, hospitals and specialists and subjected her to numerous tests, all to lead us to what we had known for years – Lola was having seizures. Sure, they looked different than most seizures, but I knew in my gut that’s what was happening to Lola and I just didn’t feel heard. But we kept on, knowing that a correct diagnosis could make a huge difference in the quality of Lola’s life, and finally, we ended up at the Cleveland Clinic. After a five-day EEG, she finally had a seizure that was detected, and we had the answer we were looking for. She was diagnosed with occipital lobe epilepsy, but underlying that was a rare condition caused by a genetic mutation (more on that below). It was a long several years of searching for answers, and it was frustrating not to feel listened to. I know I’m not alone. I work for Visually Impaired Preschool Services (VIPS Indiana), and I can’t tell you how many stories I’ve heard where parents say something is wrong with their child’s vision, and the doctors shrug it off. We need to build a healthcare system where parents are listened to, and their concerns are validated. We’ve also had struggles with insurance companies covering Lola’s therapies. We had to fight to receive coverage for the ABA therapies that were greatly improving her quality of life. It was exhausting to battle the insurance company, but we were successful in getting her the services she needed. Any advice you have for others who are experiencing similar situations and challenges? I would suggest for parents continue to follow their instincts and advocate for what their child needs. If you don’t speak up, no one will be the voice for your child. It’s okay to hold doctors, therapists, teachers, and anyone else involved in your child’s life accountable! What are some happy memories that really stay with you? Were there milestones or accomplishments that you/your child hit that you never thought would be possible?
I Would Suggest For ContinueParentsTo Follow Their Instincts And Advocate For What Their Child Needs
Vacation Destination: Vacation ... what’s that? Ha! Actually, Covid has made us stay put like most everyone, so there isn’t as much social pressure to be “out.” What I’ve learned is to lean into the things that Lola would enjoy and not put unrealistic expectations on her. We do love going up to Michigan to visit family and friends. Sports Teams: We are big hockey fans, and we especially love the Washington Capitals. Lola recently got a Washington Capitals jersey, and if she had the choice, she would never take it off. It’s really sweet. Music: I love music! I’m especially an indie rock fan and find most of the new music that I listen to on the SiriusXMU station in my van. Lola loves Queen and the song, “We Will Rock You.” In fact, she’s singing it as I type.
TV Show/Movie: We are watching Ozark right now. Obviously not kid-friendly, but we need adult things in our life, too. Lola especially loves watching people slipping on ice and America’s Funniest Home Videos. Family dinner: Like a lot of families, we love Friday family pizza night! We like to try new pizza places but especially love Futuro.
Activities/Hobbies: We love to find new playgrounds that are accessible in the city and surrounding areas! We like to take the dogs to the dog park, go to trampoline parks, play video games as a family (Fruit Ninja is especially fun!), and go to my parent’s pool in the summer.
My husband, Rob, is the e-commerce product manager for Trends International, and I am the regional director for Visually Impaired Preschool Services (VIPS Indiana). I got into the line of work that I’m in because our family was served by VIPS from 2012-2014. It was such a life-changing experience that I was inspired to do more with the agency. I started out as a volunteer, got hired in 2014 as the part-time family services coordinator then worked my way up to the regional director position. I love my job and its flexibility. It is a family-first organization, and they understand the needs that come with the complexity of our life with Lola. I feel so lucky to be able to wake up every day and do what I do. If you have children or a special needs adult still at home, what activities are they involved in?
September 202236 had little to no language just a few short years ago. Her language has just blossomed, and it has really helped with problem behaviors we were having. She’s happier now that she can articulate most of her wants and needs. It’s been so cool to hear, and I take none of her language for granted! What are your profession(s), and where do you work?
Lola participated in an adaptive soccer program, but she didn’t take to it like we thought she would. She just wanted to score goals – not really follow the rules of the game! But in a pre-Covid world, she enrolled in activities through the Joseph Maley Foundation. We especially loved their swimming program. This summer, both Lola and Sebastian went to the Jameson Camp. We were excited to see how much they both enjoyed it. This was her first year attending.
Do you have any family traditions?
Lola really loves to do all of the same things that Sebastian likes to do. She learns a lot from him. Restaurants and Food Markets: We don’t go out to eat a lot because restaurants can be overwhelming for Lola. She loves food, though, so we do a lot of fun takeout like Indian food from Mela, Chinese food from Egg Roll #1, and she loves burgers from just about anywhere!
A lot of our family traditions are like everyone else’s. We do a lot at Christmas time with baking cookies, making gingerbread houses, and trying to keep the magic of Santa alive.
Park/Play Area/Hang Out: What are some of the experiences you enjoy doing the most with your family? What can be challenging when going places? The world can be extremely overwhelming for Lola, so we take it one day at a time. There are so many things that come into play when we decide to go out for experiences as a family. Things that can influence our decision are whether Lola’s had a seizure the night before, what her mood is like, and how busy a place may be. It used to bog me down to go through the checklist of things to ensure a successful outing, but I’ve learned that I can’t control everything, and the outing will be what it will be. We recently acquired a wheelchair for Lola as she easily fatigues in public, so that has been helpful!
We Love Kids! Pediatric5-StarRatedDentistry Call 317-842-8453 to book an appointment. • providing tools to use in future appointments • establishing at-home dental hygiene routines • preparing you and your child to work through fear and anxiety andinsurancesdentalmostMedicaidaccepted
wantedonIasawaydoingbeencommunity,research,awareness,andandwe’veverysuccessfulinso.IrecentlysteppedfromtheNR2F1boardIwasjustburnedout.spent10yearsfocusingLola’sdiagnosis,andItoputmyenergy
Lola’s myriad health challenges are due to an extremely rare genetic disease called Bosch Boonstra Schaaf optic atrophy syndrome (BBSOAS), which was caused by a mutation in her NR2F1 gene. When she was first diagnosed with BBSOAS, there wasn’t even a name for it. There was little information on the internet about it, and what was there were just a couple of case studies with grim results. I was blogging at the time on Say Hola Lola, and through that blog, other moms of kids with the same diagnosis found me. A small group of us started the NR2F1 Foundation in an effort to create
What do you like to do to relax? We have a fourth bedroom that we converted into a hot workout studio. We have a bike, yoga mats, a TV and a heater. It’s perfect for getting away for 30 minutes to an hour. Rob and I both need that time away daily to refresh and re-energize ourselves. How are you involved in the community? We like to support the causes that make a difference in Lola’s life. We do spend a lot of our time, talent, and treasure at VIPS since I work for the agency, and it has made such a difference in our lives. My husband designed the VIPS website and continues to do pro bono design work for the organization. I also helped start the NR2F1 Foundation.
I would say to be vulnerable and put yourself out there via social media groups. It’s important to stay connected. I would also find ways to recharge your energy through various programs like Parents Night Out.
Gordon Homes has really helped with our special needs financial planning. His daughter, Elizabeth, happens to be a lawyer who specializes in working with families of kids with disabilities, so she helped draw up our estate planning documents and wills. It feels good to know those things are checked off the list, ultimately setting Lola and Sebastian up for the future. Access Behavior Analysis played a critical role in Lola’s learning and development. We were so grateful for them and all of Lola’s therapists she had at Access. Easterseals Crossroads is a great organization that has helped our family in immense ways. We especially love their Parents Night Out program! What else should we know about you, your family and or your business?
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I would love to talk more about VIPS and the work we are doing. We just built a new Family Resource Center near downtown Indianapolis and would love for it to be featured in a future issue of Special Needs Living. What would you tell someone who just moved to your community?
Special Needs Living - Indianapolis & Surrounding Areas 37
into something different. I recently was paired with the Damien Center for a fellowship through Leadership United, and I’m excited to learn more about the organization and how I can help. Tell us about some companies and resources that have helped you and your family navigate through the world of special needs?
By Maria Smietana
Before Allison Charette opened PEAS for Kids (PEAS stands for Psychoeducational Evaluations and Advocacy Solutions) 18 months ago, she had already built an impressive portfolio of academic credentials and work experience. A native of Sheboygan, WI, Charette proudly chose her parents’ alma mater, the University of Wisconsin-La Crosse, where she earned a B.S. in psychology, an M.S. in education, and an education specialist degree (Ed. S.) in school psychology. Charette first lived in the Hoosier state from 2010-2011 while completing her school psychology internship in Richmond. During the 2011-2012 school year, she went back home and not only finished writing her master’s thesis but gained real-life working experience covering school psychologist positions for employees on maternity leave. That summer, she spent two months in the White Mountains of New Hampshire, working as a gymnastics instructor at Camp Walt Whitman, one of the hundreds of summer camps that have been a traditional part of New England childhoods for over a century. It was there that she met Pat, a fellow instructor who would eventually become her husband. Over the next five years, Charette worked as a school psychologist for the Naperville, Illinois Community Unit School District 203, UNO Charter Schools (now Acero Schools) in Chicago, and as the testing coordinator for Chicago Public Schools. After becoming engaged in 2016, she and Pat realized they wanted a different lifestyle for their future family, so they moved to Indiana, where she took a school psychologist position for Indianapolis Public Schools. “I now contract with schools all around the state of Indiana, including virtual schools,” she said. “I also obtained my Director of Exceptional Needs Licensure in 2021, as well as my Independent Practice Endorsement, which allowed me to open PEAS for Kids.”PEAS for Kids specializes in educational consultation, advocacy, and customized assessment plans for kids in grades ranging from prekindergarten through 12th grade and beyond. “Assessment plans address emotional concerns and learning disabilities such as dyslexia, as well as characteristics of autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD),” Charette said. “We utilize the results of our evaluations to provide recommendations for home and school. We then work with parents in advocating for their child’s educational needs within the school setting. Beginning this August, we will also be offering one-on-one tutoring for all ages and abilities.”
PEAS for Kids has also started providing support for school districts that are having difficulty navigating the evaluation process, which can be due to staffing shortages, Covid-19 protocols, or other factors. In the process of Logo Maria Smietana – Editor-in-Chief
forPEASKids
September 202238 sponsor of the month
When the Charettes aren’t working on growing their businesses (Pat opened EFS Indy, an in-home personal training company, while Allison was launching PEAS for Kids), they’re likely spending time with friends and family. Her parents, now retired, still reside in Sheboygan, home of Sargento Cheese and die-hard Green Bay Packers fans. “I have a gigantic extended family, with 11 aunts and uncles on my mom’s side, and four on my dad’s side,” she said. “My mother was born in Colombia, completing fitness races together, and attending sporting events. Six years after meeting at summer camp, the two were married at Traders Point Creamery in 2018 and added a Covid puppy to the family in 2020.
making that leap, “we carefully picked some of the most talented school psychologists, speech-language pathologists, occupational therapists, social workers, and board-certified behavior analysts (BCBAs) that Indiana has to offer,” Charette said.
PEAS for Kids strives to set itself apart by offering support to parents even after their child’s evaluation has been completed. “Oftentimes, parents are given a report after meeting with the clinician regarding the results of the evaluation, but typically it ends there,” Charette said. “In contrast, PEAS staff members attend meetings with parents and help advocate for goals and recommendations consistent with the results of the evaluation.”
The company is also looking into developing a nonprofit side to be able to provide services to students whose parents have difficulty affording the cost of an outside evaluation or tutoringCharette’sservices.general advice for special needs families is to keep asking questions once their child enters school. “The special education process can be extremely confusing,” she said. “Even after [earning three degrees], as well as spending 12 years in the business, I am continuously learning new things and searching for answers. Please, please ask as many questions as you need to feel comfortable!”
Charette supports Special Needs Living because it provides vital information to families with children who have varying ability levels. “These families can often be overwhelmed with where to find information, and I believe this magazine provides the resources they need all in one place,” she said.
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Sans
Special Needs Living - Indianapolis & Surrounding Areas 41
Gluten
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.
By Christina McGairk
Although we don’t do it often, TiTi and I like to make our own pizza. It’s one of our mommy/daughter bonding activities, even though I’ve noticed the pizza sauce is the only thing that makes it onto the pizza crust. By the time we actually get through making the pizza, only half of the crust is covered with pepperoni. Most of it is in our Intummies.thismonth’s column, I’m not going to post a gluten-free pizza recipe because pizza is all about how you make it your own. So I’ll leave it to you, our readers. But I will provide the name of the pre-made gluten-free crust that we like to use and our favorite sauce. Bon appetit! Before I get into our favorite gluten-free pizza crust, I want to draw your attention to a couple of things. Not all gluten-free crusts are created equal. Some may have more saturated fat, sodium, hidden calories, and more. It’s best if you pick a glutenfree pizza crust that’s made with almond flour or chickpeas, like Banza. Banza chickpea pizza crust is our absolute favorite. Not only is it made out of quality ingredients, but it also tastes good and has eight grams of protein per two slices. Now onto the pizza sauces. There is more to the sauces than tomatoes, salt, and spices. Lurking within its redness can be thickeners, food starches, and malt ingredients that contain gluten. There are plenty of gluten-free pizza sauces out there, though, like our favorite brand, Classico. We get the classic version which includes basil, garlic, oregano, andWhicheverfennel. way you decide to construct or devour your gluten-free pizza, just make sure to enjoy it. Bon appetit!
It’s raining pepperonis! Well, not really, but my daughter TiTi would be jumping up and down with excitement if that were the case. September is actually when National Pepperoni Pizza Day is celebrated. On September 20, pizza places around the country sing praises to the yummy slices of pizza with the spicy, meaty, round deliciousness on top. There are a variety of options, too. Besides the original beef pepperoni that we’ve grown accustomed to, there’s also turkey pepperoni (TiTi’s favorite), pork, and even vegan pepperoni. Even though there are many different variations of pepperoni in pizza history, pepperoni itself is believed to have first been made in Italy (which makes sense) and was found in Italian delis in New York City in the early 1900s. The first mention of pepperoni on a pizza was in the 1950s when an East Coast pizzeria advertised it. Since then, you can’t pass by a pizza place or scan through a pizza commercial without seeing pepperoni somewhere. Whether it’s cubed, diced, sliced, or chopped, pepperoni is definitely here to stay.
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 the gluten-free diet or celiac disease, please contact your medical professional. Thank you!
September 202242 adult achievers spotlight MEET JAMEY ROWE
By Zach Elliott
In his art and music, LeAnna Rowe’s son, 18-year-old James “Jamey” Rowe, has grown into an outstanding young artist, with the best yet to come. A life-long Indiana resident, Jamey was diagnosed with autism at 2 years of age and quickly lost all his communication skills. Soon after, he began learning American Sign Language and started using early intervention services. Slowly but surely, Jamey was able to regain his verbalGrowingcommunication.up,Jamey realized he had a talent and passion for music while in music therapy. He began taking piano lessons at Miss Shannon’s Music Studio, eventually expanding his Zach Elliott – Writer
Special Needs Living - Indianapolis & Surrounding Areas 43 musical repertoire to include violin, viola, harp, and percussion. Jamey’s musical career was not limited to lessons. He began using his budding skills to accumulate impressive accomplishments. Across multiple Indiana youth orchestras, Jamey has held first-chair positions, has completed college-credit summer courses at the Berklee College of Music, has won national and international music competitions, and acted as a volunteer coordinator for the Franklin County Volunteer Musicians for the Arts. He was also featured as a guest musician with Northern Kentucky University’s orchestra.
A fan of bluegrass, classical, and especially jazz music, one of Jamey’s inspirations is the jazz pianist and composer Matt Savage, who also has autism. Savage is a motivation because he has succeeded in the music world despite communication and social barriers. In another huge moment, Jamey was able to open for Savage at a show in CurrentlyIndianapolis.in11thgrade at the Indiana Agriculture and Technology School, Jamey is also a member of the Southeast Indiana Youth Orchestra, Symphonic Youth Orchestra of Greater Indianapolis, Special Olympics-Franklin County, and participates in Sam’s Jams Farm. He was recently named state winner for fruit production at the Indiana FFA convention.Oncehe is out of school, Jamey hopes to become an artist, composer, and musician, continuing to build on his burgeoning talents. He would love to perform as a member of an orchestra or chamber group. Music and art changed Jamey’s life by helping with his autism, and he hopes to pay it forward. By bringing his music to those with disabilities, he hopes he can change lives in the same way music has changed his.
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Special Needs Living - Indianapolis & Surrounding Areas 45 Elizabeth A. Homes, Esq., MBA ehomeslaw.com | elizabeth@ehomeslaw.com317-660-500410412AllisonvilleRoad,Suite200AElizabethA.Homesisa special needs planning and elder law attorney. She has been licensed and practicing law since May of 2014. Her practice at the Law O ce 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?" Here to help you put plans in place to give you peace of mind. Special Needs Planning & Elder Law Attorney 317-698-5264 | teamrichards25@yahoo.com We recognize that every individual with Autism is unique in terms of his or her challenges and strengths. Whether you are a family who has just received an Autism diagnosis, you have an older child in the later stages of treatment, or anything in between, ACE will create an Applied Behavior Analysis (ABA) therapy program that will work for your child and your family. IN HOME & CLINIC-BASED SERVICES In-Network With Most Insurances A.C.E. GroundFromLearnersExceptionalGrowingIsTheUp! www.autismenrichment.com (317) 436-7080 | info@autismenrichment.com WeeSpeak Lafayette • 765-446-8300 35 Executive Dr, #5 • Lafayette, IN 47905 weespeaktlc@gmail.com • weespeaktlc.com Looking for physical, occupational, or speech therapy for kids? Choose a family-friendly therapy center that makes parent education a priority. YOUR COMMUNITYOFVALUABLEBECOMEPOTENTIALFULLESTREACHDESERVESCHILDTOHISANDAPARTHISAccordingto the Center for Disease Control, 15% of children between ages 3 and 17 have encountered some form of a developmental delay. Is your child developing at the "right" pace? REQUEST A CHILD DEVELOPMENT EVALUATION TODAY!
46 Saturday, September 24, 11a-2p Connections Case Management, Greenwood Public Library, Inspire Case Management, and Putnam County Comprehensive Services present 2ND ANNUAL SOUTHSIDE DISABILITY RESOURCE FAIR Greenwood Library 310 S. Meridian St. Greenwood Food · Interactive Activities · Vendors · Raffles Questions? info@connections-in.com · https://fb.me/e/1K445gl7H Free Over Vendors45SensoryRoom BODY Looking for a fun movement activity the whole family can enJOY? Interested in boosting brain function while increasing strength and flexibility in your body? WE HAVE THE CLASS FOR YOU! Be like Nicholas and his family and join us for JOYful JOYnts Virtual Classes. We are LIVE on ZOOM every Tuesday morning (or receive the class recording) Sign up now and get your free month at www.gymrootsinc.com/joyful-joynts and CBD OIL & TINCTURES • EDIBLES • SKINCARE • PETS (317) 961-0191 • INDYCBDPLUS.COM locally owned and operated | Monday-Friday: 10AM-6PM | Saturday: 10AM-5PM | Sunday: 12pm-5pm
Special Needs Living - Indianapolis & Surrounding Areas 47 120 Camilla Ct. Westfield Additional46074public parking across from Union Jack’s Pub at 110 S Union and in the gravel lot just south of Union Jack’s. Our events are every Tuesday in September: 6, 13, 20, and 27. Call us today 317-852-2422 or visit hostetterlegal.com to schedule your consultation. Experienced Attorneys Serving Hendricks, Boone, and Marion Counties and beyond. Get Immediate Results – And Long-Term Support Estate Planning Resounding Joy’s Healing Notes program uplifts children with challenging conditions, helps them achieve their goals, and supports health and wellness for their families. Creating Meaningful Music Experiences One Class at a Time! 200 South Rangeline Rd. Suite 129 46032 lzehren@resoundingjoyinc.org | 317-207-0423 not-for-profit • evidence-based services Board-Certified music therapists • support services for the whole family waiver and non-waiver services • group and individual options in-person and virtual options RESOUNDINGJOYINC.ORG Scan to Sign Up ClassesforToday.
September 202248
Special Needs Living - Indianapolis & Surrounding Areas 49
If You Can Dream It, We Can Help You Live It. Noble has been expanding opportunities and enhancing the quality of life for people with disabilities since 1953. At Noble, our goal is to meet the needs of the children and adults so they can “Dream It. Live It.” every day. • Family & Support Services • Youth Services • Adult Life Services • Employment • Therapies • Advocacy Learn more at MyNobleLife.org, on social media, or at 317-375-2700. olutionsIMPRESSIONS.FIRSTCREATIVE 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 o ering our cutting-edge services in Indianapolis and beyond. Call our o ce at (317) 890-1100 and request a consultation today. 317-890-1100 • cisindy.net • @CiSIndianapolis "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."
