Special Needs Living March 2023 Issue

Page 14

On the cover: MEET THE RIVARD FAMILY — Sam, Meghan, Anna and Micah

PHOTOS BY: 21 VINES
MARCH 2023
PHOTOGRAPHY

More than a Trampoline Park

Adrenaline is the perfect place for an adventure!

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

10080 E 121st St Suite 182

Fishers, Indiana 46037 317-572-2999

adrenaline shers1.com

events@adrenaline shers.com

ISSUE PREVIEW

Rivard Family pages 50-53

Important Community Connections

14-15

Sponsor Spotlight 16-17

Meet Will Jones 20-23

Pastor Corner: 36

Nonprofit Spotlight 38-39

Local Events 42-44

Save the Date 47

OWNER/ADVERTISING INQUIRIES

Jamie McCabe

248-882-8448

Jamie.McCabe @n2co.com

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4 March 2023
Meet Will Jones The Rivard Family SAVE
THE DATE!
Spotlight
Sponsor Spotlight
Nonprofit

n2co.com

IMPORTANT NUMBERS

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 Indiana

www.arcind.org

Autism Community Connection

www.autismcc-in.org

Autism Society of Indiana

Blind and Visually Impaired Services (BVIS)

Bureau of Developmental Disabilities Services (BDDS)

Bureau of Rehabilitation Services (BRS)

Deaf and Hard of Hearing Services (DHHS)

DHHSHelp@fssa/in.gov

Disability Determination Bureau

Division of Aging (IDA)

Division of Family Resources (DFR)

Division of Mental Health and Addiction

Down Syndrome Indiana

Early Childhood and Out of School Learning (OECOSL) Easterseals Crossroads

https://eastersealscrossroads.org

800-545-7763

Emergency First Steps

INSOURCE – www.insource.org

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

Indiana Family to Family - www.inf2f.org

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

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

Indiana Resource Center for Autism

Indiana State Department of Health

Indiana Statewide Independent Living Council (INSILC)

Indiana Works

INSOURCE – http://insource.org/

Medicaid Disability

Medicaid Waivers

Social Security Administration (SSA)

Social Security Disability Insurance (SSDI)

Special Education Questions

United Cerebral Palsy Association of Greater Indiana Vocational Rehabilitation Services (VR)

Scan to view the past issues of Special Needs Living Indy

is what happens when preparation meets opportunity.

At Connections we are adamant that all individuals should have access to options and opportunities, which are essential to growth and progress.

317-710-7184 | connectionsin.com

Scan or text the letters SNL to the number 55433 to get the digital copy of SNL through text message.

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.

6 March 2023 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
Luck
Delivering Neighborhood Connections © 2023 The N2 Company, Inc.

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

Grateful Care ABA (317) 572-5315 gratefulcareaba.com/

Link to Learn (317) 863-8388

Mindful and Modern ABA Therapies (317) 827-7777

Piece by Piece Autism Center (765) 481-2261

Step Ahead ABA (317) 732-8380

The Umbrella Center (463) 701-0909

ABA/COMPREHENSIVE SERVICES

The Hope Source (317) 578-0410

ACCOUNTING/PAYROLL/TAXES

Borshoff Consulting LLC. Sherry Borshoff (317) 902-6539

ADVOCACY/EVALUATIONS

PEAS for Kids (920) 980-1172

ATTORNEY

Hostetter & Associates (317) 852-2422

ATTORNEY-WILLS/TRUSTS/ESTATE PLANNING

Law Office of Elizabeth A. Homes LLC (317) 660-5004

BEHAVIOR MANAGEMENT

Supportive Behavior Services (765) 337-1895

www.supportivebehaviorservices.com

CASE MANAGEMENT

Connections Case Management (317) 440-0637

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

CAT CARE & SITTING

Bastet Cat Care & Sitting (317) 919-1948

CBD SUPPLIER

Indy CBD Plus (317) 961-0191

COMMUNITY SUPPORT

Achieve Community Services (317) 918-0337 acssupports.com/

Ausome Indy (317) 331-2434 ausomeindy.org/

Indiana ACT for Families (317) 536-6900

COUNSELING SERVICE

Mark 2 Ministries (317) 777-8070

DAY / BEHAVIORAL SERVICES

Developmental Disabilities Systems INC. - DDSI (317) 477-8240

DENTAL

Children’s Dental Center (317) 842-8453

FINANCIAL

Munder Financial

James Munder (317) 238-6621

WestPoint Financial Group

Gordon Homes (317) 567-2005

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 SERVICES

SafeInHome (855) 476-6665

HOME HEALTH SERVICES

Tendercare Home Health Services (317) 620-3992

www.tchhs.net/

HOME MODIFICATIONS / SPECIALTY EQUIPMENT

Specialized Home Care Services (888) 506-4182

www.specialized4u.com/

INDOOR TRAMPOLINE PARK

Adrenaline Family Adventure Park (317) 572-2999

www.adrenalinefishers1.com

INSURANCE

State Farm

John Cole (317) 430-1958

INVESTMENT MANAGEMENT

Dan Claxton Investment Advisory & Broker

Dan Claxton (317) 250-8080

LANDSCAPING/LAWN CARE/ LANDSCAPE LIGHTING

Franco Landscaping, Inc (317) 858-3858

8 March 2023

MORTGAGE

CrossCountry Mortgage (317) 666-4679

MUSIC THERAPY

Dynamic Music Therapy (317) 829-6654

Resounding Joy (858) 888-0899

NEUROFEEDBACK THERAPY

Indy Neurofeedback (317) 888-8500

PARKS & RECREATION

Johnson County Parks & Recreation (812) 526-6809

PEDIATRIC HOME CARE Guardian Care (317) 360-0359

myguardian.care/

PEDIATRIC THERAPY Wee Speak (765) 446-8300

REALTOR

F.C. Tucker

Nicole Lyon (317) 501-0639

REGENERATIVE MEDICINE/STEM CELL THERAPY

Destination ReGen (317) 522-1980

SCHOOL

Dynamic Minds Academy (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

SPEECH THERAPY

Positive Interactions Therapy (317) 518-0627

positiveinteractionstherapy.com

SUPPORT SERVICES

Easterseals Crossroads (317) 466-1000

Embracing Abilities (317) 825-8326

Joseph Maley Foundation (317) 432-6657

www.josephmaley.org

The ALTRUIST Group, LLC (317) 547-3041 x1005

Wabash Center (765) 423-5531

THERAPEUTIC RIDING CENTER

Morning Dove Therapeutic Riding Center (317) 733-9393

THERAPY & TESTING SERVICES

The Brain Center (317) 748-0034

Special Needs Living Indy 9
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 for Classes Today.

HeartSOS

Children, A dolescents, Young A dults with A SD & R elated Needs

Mental Health Counseling

A nxiety, Depression, A ttachment, PTSD & R elationships

Speech Therapy

Self- A dvocacy, A rticulation, Feeding, A praxia & R elationships

Family Guidance

Social Communication, Emotional R egulation, Flexible Thinking & R elationships

Occupational Therapy

Executive Functioning, A DLs, Sensory Processing & R elationships

Indy & Terre Haute Clinics

Outpatient Services for Individuals & Families

W e H e a r Y o u r S O S !

R each out at asdheartsos. com

10 March 2023
Special Needs Living Indy 11

MEET THE SPECIAL NEEDS LIVING INDY TEAM

Special Needs Living Indy 13
Angelica N. Gray, MA, BCBA, LBA – Writer Jamie McCabe – Publisher and Area Director Tasha Cleaver – SNL Account Executive Christia Woodford –Publishing Assistant and Local Events Brooke Russell –Operations and Events Manager Lisa DeFilippo – Writer and Contributor Maria Smietana – Editorin-Chief Dr. Darolyn “Lyn” Jones –Content Coordinator and Writer Heather Gregg –Photographer, 21 Vines Photography Christie and Nathan Buonanno –Buonanno Photography Paul Hathcoat – Writer and Contributor Kendal Ford – Kendal Nicole Photography Christina McGairk – Editor and Writer Tanya Sood – Writer and Contributor DeAndra Yates – Writer Sheila Wolfe – Writer and Contributor Jane Gailey – Contributor Dorie Zipperle – Writer and Contributor Aaron Olson – Writer Isaac Roman – Writer and Photographer Matt Knight – Writer Angela Arlington –Community Engagement Coordinator, Writer and Contributor

IMPORTANT COMMUNITY CONNECTIONS

Need to know who to connect with to ask a question? This is where you find out who you need to know!

ARC OF INDIANA

317-977-2375 or 800-382-9100

www.arcind.org

Special needs trust, advocacy network, support in applying for waivers and social security, family support, Self Advocates of Indiana

AUTISM SOCIETY OF INDIANA

800-609-8448

www.autismsocietyofindiana.org

Resources, support, events

BUREAU OF DEVELOPMENTAL DISABILITIES SERVICES (BDDS)

800-545-7763

Community Integration and Habilitation Waiver, Family Supports Waiver, Supervised Group Living, consumer and provider education and resources, Caregiver Supports Services, Contact to update and track if on a waiver waitlist.

DIVISION OF FAMILY RESOURCES (DFR)

800-403-0864

Receives applications and determines eligibility for Medicaid, Supplemental Nutrition Assistance Program, Temporary Assistance for Needy Families and Refugee Cash Assistance.

DOWN SYNDROME INDIANA

317-925-7617

www.dsindiana.org

information, resources, events

EASTERSEALS CROSSROADS

317-488-1000

www.eastersealscrossroads.org

Adult Day Services, Adult Outpatient Medical Rehabilitation Programs, Children and Adolescent Outpatient Medical Rehabilitation Programs, Employment Services, Community Services, Assistive Technology Supports and Services

FAMILIES UNITED FOR SUPPORT AND ENCOURAGEMENT (FUSE)

317-462-9064

www.fuseinc.org

Serves families of children with disabilities of all types. Events, support groups, resources, monthly newsletter

COMMUNITY RESOURCES

FINDER INDIANA DISABILITY RESOURCES

www.indianadisabilityresourcefinder.org/

Directory of services for the disability community

FIRST STEPS

800-545-7763

www.firststeps.in.gov

Early intervention for children from birth to 3 years old with developmental delays. Evaluations and therapies in-home

DISABILITY LEGAL SERVICES OF INDIANA

317-426-7733

www.disabilitylegalservicesindiana.org

A nonprofit organization offering free and low-cost legal services to the disabled community on any civil matters

INDIANA FAMILY AND SOCIAL SERVICES ADMINISTRATION (FSSA)

317-233-4454

www.in.gov/fssa/index.htm

Serves families, children, senior citizens, people with disabilities and mental illness

INDIANA FAMILY TO FAMILY

844-323-4638

www.inf2f.org

Information, education, training, outreach and peer support for families

INDIANA RESOURCE CENTER FOR AUTISM (IRCA)

812-855-6508

www.iidc.indiana.edu/irca/index.html

Online articles, resources, training and conferences

INDIANA VOCATIONAL REHABILITATION

800-545-7763

www.vrs.in.gov

Vocational counseling and training, job placement assistance, physical and mental restoration services, rehabilitation technology (e.g., adaptive devices, vehicle modifications)

IN*SOURCE

800-332-4433

www.insource.org

Special needs education support, Advocates for IEP help

NATIONAL SUICIDE PREVENTION HOTLINE

988 or 800-273-TALK (8255)

Resources and support for any kind of mental health issues

NATIONAL ALLIANCE FOR MENTAL ILLNESS (NAMI) — INDIANA

800-677-6442

www.namiindiana.org

Support groups, classes, resources, conferences, information

211

Database of organizations to help with any type of needs by location in Indiana

PATINS

www.patinsproject.org

Supports students in public schools with accessible educational materials, assistive technology, Universal Design for Learning, expos

Have a suggestion for an important connection that could be added to this page? Email your suggestion to Jamie.McCabe@n2co.com.

Special Needs Living Indy 15

SUPPORTIVE BEHAVIOR SERVICES

Okay Joaquin, tell me about yourself, what was your journey to get here?

“Yeah, my absolute least favorite question ever. Let’s see, I am in my 30s and I am from Lafayette. I went to Indiana State University for my undergrad and graduate degrees. I began as a behavior consultant a long time ago and continue to practice to this day. Eventually I worked myself up to becoming an agency director and further learned and grew, which set the stage for me to build SBS. These days I oversee SBS, co-own an aba center (Indiana Full Spectrum Therapies), and host the IBA podcast, which has been an exciting challenge for me.”

Can you tell me about Supportive Behavior Services (SBS) and its mission as a company?

“Supportive Behavior Services is an Indiana Medicaid Waiver provider of Behavior Management services. Of course, in my opinion, we are the premier behavior provider that is leading the way in the industry. When I opened SBS, one of the founding principles was that Behavior Management would be the only service we will provide. This is so that we can stay focused at being the best at what we know and not venture into other services that we are not qualified in. We are statewide and have the best behavior consultants spanning all 92 counties of Indiana, providing behavior services for almost 1000 individuals that we are fortunate enough to serve. When this is published, we will likely be approaching or have reached 100 behavior consultants across

16 March 2023 SPONSOR OF THE MONTH

Indiana. Our primary mission is to do the best by the behavior consultants. Then they will do the best by the individuals we serve. That is how it should be.”

One thing I have been wondering, is how have you managed to pay Behavior Consultants (BCs) so much more in comparison to other companies in your industry?

“Ah yes, I get asked that one frequently. Simply put, I think they could pay more, but do not. In this very specific industry, I believe we have also identified a lot of unnecessary expenses that are made and cut them out. We serve the Home and Community-Based Services (HCBS) waivers and that means we provide our services in the individuals’ homes or with them in the community. We do not have a need for large buildings or offices which go unused. A typical day as a BC starts from home, then the BC goes out to see some of their individuals that day, then returns to their home to complete their paperwork. Occasionally they may need to hit the office for some printing, but we phased that out by paying everyone better so they can access printing right from home. SBS has modernized its service delivery and cut back on so many conventional, but unnecessary expenses, which directly turns into higher pay.

The reimbursement rate for our service, from the Medicaid Waiver, is $72.80 per billable hour and was set back in the early 2000s. We certainly feel the industry is due for a rate increase after all this time, but it has not happened yet. So, to lead the way and set a higher standard of pay for BCs, SBS pays clinicians up to 90% of the reimbursement rate, which is $65.52 per billable hour. We pay the best because it is the right thing to do and we pay in percentages, so when the reimbursement rate goes up, the BCs pay will also go up.”

Without a central hub, like an office, how are you creating a sense of community for the Behavior Consultants of SBS?

“I must admit, with as many clinicians as we have and how we are spread across the entire state, it can be difficult. I will say, to bring team cohesion together, the wonderful Regional Directors at SBS work on various ways to stay connected, like smaller team meetings. We also put on regular trainings and workshops the whole company is invited to, but not obligated to attend via Zoom. Additionally, we created the

Indiana Behavior Association, a professional association for behavior consultants from all agencies to come together for monthly continuing education units (CEUs) and for quarterly association meetings. Truthfully, it does vary. There are BCs that want to be more involved and there are those who want to do their own thing, they do their job, complete their paperwork, and they are good. We treat master-level clinicians with the dignity, autonomy, and respect they should be treated with. We let them decide and we really see them thrive in this environment we have been lucky enough to create.”

Okay Joaquin, tell me what sets SBS apart from the hundreds of competitors in Indiana?

“One of the things I pride myself on, is the fact that I am still a practicing clinician. Although being the executive director dominates my schedule, I still serve individuals and write behavior support plans. Every director at SBS is a practicing clinician that sees individuals, writes plans, and is in the field just like all of us. Currently, we do not have anyone working for SBS that is not a clinician. That is what certainly separates us, everyone is in the field, they see what is going on, they know the difficulties, the barriers, and the wonderful things happening out there. I believe because of those things, we are outperforming, outinnovating, and out-recruiting our competitors.”

“I also have been very outspoken about the use of non-competition clauses and restrictive covenants that many of our competitors use. We do not and will never bind any of our clinicians or families with these highly problematic covenants. A family here in Indiana could be working with a great clinician for the last 5 years, having made great progress with their child, but the clinician may be struggling with low pay as costs of living continues to rise. If that agency is not paying well, the behavior consultant may look elsewhere to continue to practice and be paid significantly better. But then the family receiving services will lose this clinician because of those restrictive covenants (and agencies often send cease & desists, threatening to sue the BC). Families should ask agencies if they use these restrictive covenants when selecting an agency so they can make truly informed decisions. These practices have been long standing and negatively impacting the Indiana disabilities industry for years. We are working diligently to usher in a better and more equitable era of behavior management services for Indiana.”

SBS is a proud member of the Indiana Behavior Association. (www.IndianaBehaviorAssociation.com).

Business Contact Information

765-337-1895

108 W. Washington St. Waynetown, IN 47990

https://www.supportivebehaviorservices.com/ SBSMain2020@gmail.com

Special Needs Living Indy 17
18

HERE TO HELP YOUR FAMILY THRIVE & SURVIVE THROUGH YOUR NEXT MOVE.

Special Needs Living Indy 19

I would love to introduce you to my family. My husband and I are Drs. James “Jim” and Darolyn “Lyn” Jones, and our son is Will. Will is 19 and has cerebral palsy and autism. He attends Hamilton Southeastern High School and is in the Functional Independence and Transitional Skills (FIATS) classroom. The FIATS classroom is designed for students with severe and profound needs. Students like Will, who are in this type of designated least restrictive educational environment setting, typically have complex medical needs. Will’s Individual Education Plan (IEP) states multiple disabilities, which requires him to receive multiple interventions.

Because of Will’s multiple disabilities and classroom setting, he can remain in school until he is 21. Will receives physical, occupational, and speech therapy through the school. He also receives weekly occupational therapy at home and, in the summers, weekly physical therapy. And this summer, he will begin recreational therapy.

Will enjoys going on walks. He loves playing with VCRs, playing videos, rewinding them, fast forwarding them. Will likes to bowl and to be read to. He loves to sort. And he loves company, someone to sit and engage with him. Will’s happy place is spending time at our family cabin, where he has a special VCR play area set up.

My husband Jim grew up in the Chicago region, and I grew up in three different communities in southeastern and southwestern Indiana. My family moved around often, and the longest place I lived anywhere was for five years. However, I have lived in the greater Indianapolis community now with my husband for almost 25 years and in my current home in Fishers for 18 years. This is the only home Will really remembers or knows, and we built it to accommodate his needs.

My husband and I have endured many challenges and struggles with our Joy Boy, Will. We waited to get pregnant and then, once pregnant, did all the right and healthy things. I had a storybook pregnancy — up until it wasn’t.

When we got pregnant, it was after 9/11, and my husband was an Infantry Combat Arms officer in the Army Reserves. He left his corporate position as a senior project engineer to take a military position with Ball State University’s Army ROTC to help train future soldiers — the country was actively sending many men to the Middle East to fight. Jim was also in command of his own Indiana Army Reserve unit.

Because we were expecting and making life and career changes, we sold our more expensive home, bought a simpler one with the

hopes that I could stay home, finish my doctorate and we could lead a simpler life with a new baby. But when my husband was out in the field, and I was in my 32nd week of pregnancy, I woke up one morning, ate breakfast, and the baby wasn’t moving — something he always did. My doctor had me come in, and they sent me immediately to the hospital because while Will was still alive, his heart was racing, and he still wasn’t moving. By the time I arrived and was hooked up to a monitor, the baby had died. They heard a faint heartbeat, and then they didn’t.

I had an emergency C-section with half of my clothes still on because there was no time to prep for this emergency surgery, and after two Apgar scores of 0 and a hematocrit level of only 16, Will scored an Apgar of 1. A normal hematocrit or red blood cell count for a newborn is between 45% and 61%. Will had bled out in utero. He was the sickest baby in the NICU. He was born at 32 1/2 weeks, weighed in at a little over 6 pounds and was almost 19 inches long. My mother had very large babies, so his larger size was something that did help him survive. My husband did not arrive at the hospital until much later that day of his birth. Red Cross was trying to get him out of the field and back to us. When he arrived at my bedside, he had tears in his eyes, the only time I have ever seen him with tears. I told Jim I named our son Will— for will to live. And the name fits him because he has a strong will--- in so many interpretations and iterations.

After that Apgar of 1, Will had to have multiple blood transfusions, and his lungs weren’t fully developed. Every limb and orifice of his body had a line or tube running in and out of it. He was on an oscillating vent that breathed for him. His brain scans showed Burst Suppression Syndrome (BSP), no brain activity. At day 14, they told us we would have to make the decision to stop the vent because no meaningful recovery could ever be made past that point with the amount of time he had been on this kind of vent.

But on day 12, ironically, miraculously, blessedly, on Mother’s Day, he was able to move to a CPAP oxygen machine and was taken off of

20 March 2023
First day back to school after two years

the vent. It was the first time I held him, and it was only for 15 minutes. It remains the very best Mother’s Day gift I have ever received. And the brain scan came back that same day, indicating no Burst Suppression Syndrome. The doctors determined that the initial BSP was a disruption in the brain caused by the lifesaving medications he had been given post-birth.

We knew then that Will was in there, somewhere. The doctors told us not to get our hopes up. After his birth, we were told he wouldn’t survive the night. And then, when he survived the first night, every day, we were told not to expect the next. Those were dark and difficult conversations my husband and I had to have. I had to remain in the hospital for eight days due to complications and to have 64 RhoGAM shots because I was RH negative and Will had bled out in utero impacting my own blood cells. However, I went downstairs to the NICU to be with Will and talk with the doctors and pump breast milk every day. Even when released, I drove an hour each way every single day to be with him, lugging my very sore body and breast pump machine, bottles, and cooler with me. I spent 8-10 hours every day with him and never missed a single day of the 39 days he was in there. My husband, then back from duty, would come after he had grabbed some dinner and stayed with Will in the NICU returning home around 10 p.m. after working 10-hour days. This was our routine for those long 39 days.

When we left the NICU, Will’s prognosis was still not good. Born dead, part angel/part boy, we had to figure out how to help him get out and grow and be who he was going to be. We grieved who he would have been while at the same time finding joy in who he could become. The doctors told us he wouldn’t live 6 months, then a year, then three years. And then, oddly, one doctor said he wouldn’t live past 8 years. He is 19 and still here, loving, living, and learning.

But his birth/death came with consequences. Will has had 39 surgeries and procedures in 19 years. He had seven therapies a week for the first three years and then three to

five therapies a week until he was 16. After a certain point, insurance just wouldn’t cover his therapies anymore, so now we privately pay what we can and rely on the excellent therapists he has at school. His school physical therapist, Deb Gastineau, has been with Will since he was 3 years old in developmental preschool. They have a special relationship.

So much about caretaking Will and raising Will has been hard. Fighting for the best doctors and surgeons and therapies and school services and resources — it’s never-ending — is both simultaneously exhausting and rewarding. But we wouldn’t change anything. Because of Will, my husband and I are better humans, better parents, better Christians and better friends to others.

Because of Will, we changed our professional careers and directions, opting to move into higher education and becoming professors, something neither one of us ever thought we would do. My goal was to finish my doctorate and work as a curriculum specialist; my husband wanted to go back to the Army full-time. Because Will transformed us and gave us purpose, we wanted to also transform — to pay it forward. Going back to school in your late 30s and early 40s with a sick baby was not easy. Money was always tight. Will was born before Obamacare and 39 days in the NICU plus all of the medical and therapy expenses afterward, me not working for six months and Jim taking a reduced salary in the Army compared to what he made in the corporate world made living this new simpler life even more burdensome. But we got through it. I look back and am not sure how, but we did it. We were younger and had more stamina and didn’t know any different, I suppose.

And when we earned our doctorates and took our positions at Ball State University, I opted to work as a nontenure line contract faculty member, which means I have much more flexibility and do not have the same kinds of commitments my husband, who is a department chair in the College of Architecture at Ball State has. I have a flexible schedule, and I can still be a

MEET JOYBOY, WILL JONES

mom and a momager to Will — which is very important to me. I never missed a single day in the NICU, and I have only missed one of his 39 procedures. I had to have surgery myself and was not allowed out of bed, so my husband had two to take care of that week. But that’s it. Otherwise, I am there for everything. And my husband, Jim, despite his demanding once-military schedule and now-work schedule, is there for so much. We are partners and parents in Will’s care and happiness.

And I am grateful that I even get to work. I recognize that privilege. Unfortunately, I hear from so many mothers of children with disabilities who want to work, who have brilliant experiences and skills but cannot because of lack of care for their child or lack of flexible work options that pay a decent salary. I wish that society would 1) pay women equal pay and 2) recognize that mothers have so much to offer the workforce. Work with us around our schedules, and we can show you that we have some mad skills. I can talk on the phone with a home health care company organizing needed supplies while changing Will’s gastronomy tube (GTube) and keeping him entertained.

One thing I have learned is that when you have a kid like Will, go through what we have gone through and are still going through, folks gather or scatter. My mother and father-in-law were the only family that stepped in to help us. Elderly themselves, they would come and help do laundry or mow or cook or change a diaper or just read to Will, so I could get homework done or prepare presentations when I was a literacy consultant and coach. And we had good friends. They are our family, too. They come to the hospital and give us breaks, bring us food, help us with

Special Needs Living Indy 21

errands and household chores, stay with Will and include Will and us in their plans.

We love our son very much. He is our joy boy. Everyone who is willing to look past Will’s very visible disability and who gets to know him loves him. Even though Will is nonambulatory, nonverbal and intellectually disabled, he knows when folks are afraid or don’t like him or are “freaked out” by him, and he mirrors that response back. He knows who the good people are. If you aren’t sure if someone you are dating is a good person or not, Will can help filter that out for you!

I could write volumes about the pain and challenges. Will has been near death several times, and he has endured more medical pain and trauma than any human should have to. Even now, he lives with chronic pain. And he and we have had to deal with more exclusion, discrimination and ignorance than this article has space for — in every space you can imagine. We have experienced it with medical professionals, school professionals, disability services

professionals, in the community at the grocery store, the park or on a walk.

But If I dwell there, if I dwell in the hard, it isn’t productive. What I know how to do is keep Will at the center and keep moving forward. I will keep fighting and advocating for his medical care, his waiver services, for his Social Security, for his education. He is not just my son, but a young man and a beautiful soul deserving of everything humanity has to offer someone who is “neurotypical.” He deserves to be included, loved and participate in this world. And he can do that with the right support. And do you know who has taught me the most about how to find, access and fight for those supports?

Other moms. Sitting in offices with our children, waiting to see doctors or to get called back for therapy services … we talk. There is this immediate and intimate connection because we all get it. The “it” is this life we live that, like our children, isn’t considered typical. I learned about the Medicaid waiver from a mom when Will was 4. He was born in a NICU, had multiple doctors, First Step therapists and yet, none of those specialists and interventionists told us about the Medicaid waiver. A waiver that could have helped us with those early thousands of dollars of medical bills. I learned about good orthopedic surgeons who specialize in cerebral palsy from a mom who had an older kiddo with cerebral palsy. I learned about accommodations we could make to our home using waiver dollars from a mom. I learned what a mobility van was and the kinds of mobility vans that are out there from a mom. I learned about caregiver pay you can access as the mom from a mom. The list goes on and on.

Now there are prolific social media outlets where families share this information. Three outlets I belong to and recommend are CP Warriors, Our Journey, and Indiana Special Needs Equipment Exchange. These outlets were not around when Will was younger. Social media had not yet emerged. For me, it was those quieter conversations with other mons in doctors’ offices or standing in the hallway or parking lots after

doctor or therapy sessions that I learned the most.

Two moms sitting in a sterile space, anxious, nervously trying to feed or calm their child. Inside, you want to run out the door and just go back home to your safe space, but you have to be here, you have to show up and you have to advocate for answers, for help for your child. Your eyes meet up with that other nervous mom, and there is this unspoken acknowledgment, “I get it.” And after that look, then you just start talking rapidly before one of you has to go back. The exchange of phone numbers means meeting for coffee or margaritas, phone calls and texts. I am now one of those older moms that people often lean on. But I still lean on some older moms who taught me: Beth DeHoff, Mimi Hyuber, Jennifer Akers and Marie Kennedy, among a long list of others. Talk to other mothers. Gather strategies, ideas and resources from the moms who get it.

A mom moment and milestone for Will was when I first met now Fishers City Councilwoman Cecelia Coble. Her daughter is close in age to Will. We were sitting in a waiting room, waiting for our child’s respective therapists to come out and take our kiddos back to Hippotherapy at TherAplay. And somehow, the topic of crawling came up. I explained that at almost 2, Will still couldn’t crawl. And Cecelia told me not to give up hope because her daughter finally started crawling after a year and a half. And after doing absolutely everything the therapists told us to do and trying every incentive I could conjure, one day, Will started crawling. It was ugly, but he did it. He was 2 years old. And he became Super Crawler — that kid was lightning fast and got into everything and was everywhere. Suddenly I had to baby-

22 March 2023
Will and Grandpa Will, Mom and Dad Will and Mom

proof the house. But what a victory and what a joy.

And one of the saddest days for us was when he couldn’t crawl anymore because his hips were coming out of place, and he had to have them surgically placed in a way that would not allow him to crawl anymore. But then we looked forward to the mischief he was able to get in rolling himself around in his wheelchair. He once decided he didn’t like the music in his teacher’s class and rolled out in protest. I love that he got in trouble and that I got a call from the school. We celebrated that call!

Here is my advice to newer moms.

Grieve the loss of family and friends. It will happen. And then knock that dust off and celebrate in the folks who want to support and love your family. The folks who don’t get it, aren’t willing to get it, or who don’t want to get it aren’t worth your or your child’s energy. In the medical profession, they practice medicine. Don’t be afraid to question, to get second opinions, to seek answers. Find medical professionals who are willing to work with you as though you were part of the team, not a passive participant.

Connect to other moms and to older moms — they are the ones who will share with you what the school, medical, and social services either don’t know or don’t have access to. And they don’t have to be moms whose child has the same condition as yours. Widen your perspective. One child with down syndrome, cerebral palsy or autism is one child. No two are alike. I learned so much from mothers of children whose children did not have cerebral palsy or autism.

It can lonely and isolating, and marginalizing to live this life. Find ways to socialize or work or live somehow

in a space that isn’t all disability. My position as a professor at Ball State University is not easy, and it does often require me to work very late nights or very early mornings before Will gets up, but I love having something for me, something different. I love engaging with my students and with my community partners in Muncie. And Will has impacted my teaching and scholarly work in such positive ways. I don’t think I would have ever been as productive and successful a professor as I have been had it not been for Will. Don’t feel guilty about accessing available resources. They are there for your child and your family. Take advantage of what is available to your child and family. Raising and caring for our children is very expensive. I can’t just go to the grocery store and buy formula. It’s not that easy.

When folks give you those looks of pity or ask questions that are sometimes phrased offensively or ignorantly, I try very hard not to overreact but to take on the role of educator. Now, have I “momma beared it” a few times? Oh, yes, I have. I’m human. But I try to take a breath and then respond. I am often asked, “What’s wrong with him?” or “What’s

wrong with his legs?” or “Why can’t he talk?” I’ll reply that nothing is wrong with him but that he has cerebral palsy, and he gets around on wheels and uses a smart device — just like we often do — to communicate. And when folks then reply with, “Oh, I’m so sorry,” accompanied with a look of pity, I reply, “Don’t be. He’s a great kid!” And if a child asks, I always invite them to come meet Will and answer all of their questions. Because kids ask out of genuine curiosity and interest. Their motives are pure and unfiltered because they are innocent.

Finally, and this is how I will end this article. This last piece of advice is something that didn’t come to me until Will was several years old. I admit that early on, I asked, “Why me? Why did this happen to me?” And now I say, “Thank God it was me,” because I can’t imagine Will landing with any other family

but us. He’s our joyboy. He was meant

Special Needs Living Indy 23
Will Joy Boy Will and Dad
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I hope you find these resources helpful.

SPECIAL NEEDS LIVING INDY — SHARING HELPFUL RESOURCES!

One of the goals at Special Needs Living Indy is to provide as much value as possible to support the Special Needs community!

Here’s a link to view all the past issues of Special Needs Living Indy — https://issuu.com/specialneedslivingindy.

If you would like to learn more about Special Needs Living Indy, we can find ways we can partner together to better impact the community. I’d love to set up a call to chat more. Here is a link to my calendar: https://calendly.com/jamiemccabe/special-needs-living-magazine.

Here is a great past article we did about local support groups in Indiana: https://issuu.com/ specialneedslivingindy/docs/ december_2021-special_ needs_living/s/14014143.

Here is one we did about outdoor sensory parks, places and spaces in Indiana: https://issuu.com/ specialneedslivingindy/ docs/sep_2021_special_ needs_living_indianapolis_ surro/s/13231556.

Here is one we did about indoor sensory parks, places and spaces in Indiana: https://issuu.com/ specialneedslivingindy/ docs/aug_2022_special_ needs_living_indianapolis_ surroun/s/16460960.

If an individual or family would like to share their story, click this link: https://form.jotform. com/202464921200140.

Here is a link to see all the ways to share a story in SNL: https://linktr.ee/ community.stories.

Link to sign up to get Special Needs Living Indy: https:// form.jotform.com/ 223146774923158.

26 March 2023
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What is the Bible?

Many people have heard of the Bible and know what it is. But have you ever thought about it outside of its connection to God and Jesus? Have you ever thought about its origins, content, literary style or purpose? We know that this book is spiritual in nature and points to Jesus Christ as the savior of the world, but have you ever stepped back and just looked at it from an insight and wisdom perspective, hoping to learn about it outside of the connection to your own faith or lack thereof? Let’s take a quick look at what the Bible is, as a literary work and historical document, from a Pastor’s perspective.

The Bible is simply a collection of books, or writings, that, when combined, create one long, continuous story. This collection is split into two parts: the Old Testament (OT-39 books) and the New Testament (NT-27 books). In the OT, we read about the history of the people of Israel. The authors of the OT were called the prophets. These prophets wrote the OT as an accounting about what God was doing for all people in the world. These writers were truly masters of literature and storytelling, and when you read the OT, you get a sense of how God revealed himself to His people, what the origins of the world are, and how mankind is stuck with a huge problem. Their skill and cohesiveness are evident throughout the OT.

Eventually, as an objective reader, we begin to see that the OT builds toward the hope of a new leader who would come and save all creation. This leader never comes, and the OT writings and times end. Some people have a hard time understanding how the OT and the NT connect. What do

you think? What have you observed or noticed?

The New Testament begins with the introduction of a man named Jesus. We read about this person through the writings of the Apostles. The Apostles wrote about the life, times and ministry of Jesus to relay and reveal God’s ultimate plan for all people. These 27 works reveal the history, poetry, society, governmental structure and culture of this ancient time period. Together, they serve as a historical accounting and revealing depiction of the spiritual movement that was happening in the world thousands of years ago.

When combined and read together, the OT and the NT tell the story of a creator who communicates with us, humans. It tells of our problem of sin and exposes the human condition and how it always leads to death. I find it amazing and incredible that this collection of literary works, written over the period of 1,500 years and was composed by 40 different authors, yet has one central ribbon throughout all the books.

There are brilliant sections of the written word in this literary collection that inspire and bring truth. There are parts that make us think and parts that make us feel. We find historical data and supernatural phenomena all in the same book. No matter what your belief system is, the Bible is a wonderous mystery of writing that somehow made it to our hands and eyes today in a form that seems to tell one long and continuous story of how this God, or Father of us all, has planned for our eternity, one way or another. What do you think the Bible is? What place does it have on your shelf and in your life? I pray that you can see it as a book, a work, a plan, a diary, an inspiration, and an instructional manual on who God is and what Jesus can do for your life. Go check it out! Blessings to you all.

PASTOR’S CORNER
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.

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INTRAC RELAY INDIANA

Indiana Telephone Relay Access Corporation (InTRAC) is a not-forprofit corporation established in 1991 by a law passed by the Indiana State Legislature. Its purpose is to provide telephone relay service for people who are deaf, hard of hearing or speech disabled. InTRAC’s responsibility is to

36 March 2023 NONPROFIT SPOTLIGHT
Angela Arlington — Community Engagement Coordinator, Writer and Contributor

provide relay service, Relay Indiana, to all citizens residing in Indiana.

Relay Indiana is a free service that provides full telecommunication accessibility to people who are deaf, hard of hearing, or speech disabled. This service allows user with special telecommunication devices to communicate with standard telecommunication users through specially trained Relay Communication Operators. This service is currently provided by T-Mobile under contract with InTRAC.

Greg Gantt shares, “Please do not hang up if or when you get a call and hear the words, This is Relay Indiana ...

A person who is deaf, hard of hearing or speech disabled is calling you through a Relay Indiana operator.”

“We disseminate information and/ or promote Relay Indiana more to the general population, especially those who may be in contact with deaf, hard of hearing or speech-disabled Hoosiers.”

Relay Indiana helps people who are deaf, hard of hearing or speech disabled become more independent when it comes to making telephone calls and having conversations with standard telephone users. “They no longer will have to rely on their family members and/or friends to make telephone calls for them.”

CALLING RELAY INDIANA

You can easily call 711 from anywhere in the nation and connect with any relay service. While in Indiana, if you dial 711, you will connect with Relay Indiana. If you are in Florida and dial 711, you will be connected with Relay Florida, etc.

Dial 800-743-3333, and you can still be connected with Relay Indiana from anywhere in the nation.

TYPES OF RELAY CALLS

• oice user if a person uses a standard phone and wishes to speak with others who use special equipment to communicate.

• Captel (captioned telephone) when the other party speaks, the relay operator “re-voices” the words simultaneously while the operator’s computer sends the conversation to the captel user in the form of text, which appears on the captel screen.

• TYY if a person is deaf and does not voice, they may use a text telephone.

• VCO if a person is hard of hearing and is able to voice, they may use voice carry-over.

• HCO if a person can hear but is not able to voice, they may use hearing carryover.

• Speech to Speech if a person can hear but has difficulties with unclear speech.

• Spanish to Spanish if someone wishes to have their conversation in Spanish.

• Video Relay Service (YRS) the interpreter/operator will appear on the screen and will place your call in the same way as a standard relay call.

• Internet Relay you will be able to see what you are typing and what the relay operator is typing at the same time.

• Greg wants the community to be aware of the services available. “InTRAC provides free training to social service organizations serving the disability and general community on how to make Relay Indiana calls.”

Special Needs Living Indy 37
38 March 2023 Allison M Charette, Ed.S. Nationally Certified School Psychologist Founder, PEAS for Kids (920) 980-1172 • www.peas4kids.com allison@peas4kids.com PEAS for Kids 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 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 2100 S Morgantown Rd Greenwood, IN 46143 812.526.6809 www.jocoparks.com Follow us on Facebook! @injocoparks @jocoind • All Inclusive Playground Remodeled in 2020 featuring an Interactive YALP & Sona Arch • 3 Rentable Shelters • Wheelchair Accessible Trail with JCPL Storywalk • Wheelchair Accessible Basketball Court Independence Park - a place to PLAY for ALL 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 1-855-476-6665 www.safeinhome.com Scan Me

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LOCAL EVENTS

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 the 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 the event status and listed details in case event details have changed since posting.

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.

MUSEUMS

THE CHILDREN’S MUSEUM OF INDIANAPOLIS MINECRAFT: THE EXHIBITION OPENING CELEBRATION

Hearthside Supper

Thursdays through Sundays, Jan. 19-March 19, 2023.

6 p.m.-9:30 p.m

Each winter, Conner Prairie offers our Hearthside Supper, a monthslong series that celebrates historic foodways, traditional hearth cooking, and the fellowship of the communal table. Presented in candlelight by costumed interpreters in the beautiful 1823 William Conner House, this program offers guests a unique and interactive one-of-a-kind experience.

March 11, 10 a.m. to 3 p.m. Explore a digital world brought to life with special activities about community art and game design. For tickets, https://www. childrensmuseum.org/visit/calendar/ event/448

VARIOUS EVENTS

March 1-March 31

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

CONNER PRAIRIE — INDIANA’S LIVING HISTORY MUSEUM

Our Hearthside Supper invites guests to take part in an entertaining evening with our costumed interpreters. Hosted in the historic 1823 William Conner House, you’ll arrive just in time for a light appetizer, then lend a hand with the final preparations of the meal.

You might churn butter, grind coffee, prepare vegetables or more. Through work, conversation and play, you’ll learn about 19th-century food and cooking techniques. Then, after receiving instruction in proper etiquette, settle in and enjoy a delicious supper by candlelight, followed by 19th-century parlor games and dessert.

SENSORY-FRIENDLY HOURS

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 sensoryfriendly hours. You will get free

40 March 2023

admission and may stay as long as you wish.

VARIOUS EVENTS

March 1 through March 31

13400 Allisonville Road, Fishers, IN 46038

Phone: 317-776-6000 or 800-966-1836

https://www.connerprairie.org/ events/list/

SPORTS

INDY FUEL

March 3, 11, 17, 18, 24, 25, 26, 31

Indiana Farmers Coliseum, 1202 E. 38th St., Indianapolis, IN 46205

https://www.indyfuelhockey.com/ news/2022/5/fuel-announce-2022-23regular-season-schedule

INDIANA PACERS

March 6, 9, 18, 27, 29, 31

Gainbridge Fieldhouse

125 South Pennsylvania St., Indianapolis, IN 46204 Box Office: 317-917-2727

https://www.nba.com/pacers

INDIANAPOLIS INDIANS

March 31

Victory Field, 501 W. Maryland St., Indianapolis, IN 46225

FAMILY FUN

INDIANAPOLIS ZOO

xZOOberance Spring Festival

March 23 through April 16, noon to 4 p.m.

After a long Indiana winter, we could all use a little xZOOberance!

We’ve expanded our annual spring festival to feature 16 days of fun, with activities running from noon-4 p.m. on event days only. https://www. indianapoliszoo.com/ events/xzooberance/

Various events are scheduled daily Check the calendar for events. https://www.indianapoliszoo.com/ visit/daily-schedule/

1200 W. Washington St., Indianapolis, IN 46222

317-630-2001

HOURS: 9 a.m.-5 p.m., Mon.-Thur., and 9 a.m.-7 p.m., Fri.-Sun. and holidays

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

MONSTER ENERGY

AMA SUPERCROSS

March 11, 2023, Starts at noon Lucas Oil Stadium, 500 S. Capitol Ave., Indianapolis, IN 46225

https://www.lucasoilstadium.com/ event/monster-energy-ama-supercrossreturns-to-lucas-oil-stadium/

SPECIAL NEEDS LIVING FAMILY

FUN NIGHT! PRESS PLAY GAMING

GAMING LOUNGE

March 14th, 6 p.m. to 8:30 p.m. 1004 E. Main St., Brownsburg, IN 46112

https://pressplaylounge.com/ “Press Play Gaming Lounge is a NEW style of family fun entertainment that includes VR, NERF, B-BALL, BEAM, POOL, MINI ARCADE and XBOX Play with much more! We are an allages venue that has 75” inch screen TVs with Xboxes and huge sectional couches. We have a Cafe with awesome stadium food and a full bar for the over 21+ crowd.

LEGO BRICKWORLD INDY

March 18 and 19, 2023, 10 a.m.-6 p.m. Indiana State Fair Grounds Blue Ribbon Pavilion, 1202 E. 38th St., Indianapolis, IN 46205

Bring the entire family for an afternoon of fun! See more than 65,000 square feet of spectacular creations, all built from LEGO bricks by local LEGO enthusiasts. Enjoy interactive activities, such as the LEGO and DUPLO play brick areas, seek and finds, fighting robots, etc. Buy your

favorite LEGO sets, mini-figures, and LEGO accessories from various vendors.

https://www.indianastatefair.com/ events/2023/brickworld-indy222

THE ARTS

BEEF AND BOARDS

Footloose

Feb. 9-March 26

An American In Paris

March 30-May 14

9301 Michigan Road, Indianapolis, IN 46268

317-872-9664

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

JUBILATE CHOIR

Butler University, Lilly Hall, Room 133 Wednesdays, 6:45-7:30 p.m.

The Jubilate Choir is for singers with special needs in grades 3-9.

The Jubilate Choir singers with varying abilities meet each week to grow musically. This tuition-free choir focuses on proper singing techniques, music theory and sight-reading, partsinging, and social skills involved in being a member of a musical ensemble.

Though the choir has, at its core, the same goals as other choirs in the ICC. Singers in Jubilate engage in additional activities like visual and tactile experiences that are catered specifically to the current members of the choir.

Director: Lauren Southard

Start Date: Sept. 22, 2021

For more information, contact Lauren Southard at 317-940-8065 or lsouthar@icchoir.org.

https://icchoir.org/special-needs/

Special Needs Living Indy 41
THE STUDIO MOVIE GRILL

Various classes during the week.

5909 E. 86th St. Indianapolis, IN 46250 317-288-8235

indy@gigisplayhouse.org

EVENTS

LAWARENCE ADVISORY COUNCIL ON DISABILITIES

March 2nd 5-7:30pm

Sponsored by Fortune Academy

1st Annual Disability Resource Fair Fortune Academy

5626 Lawton Loop E. Dr. Indianapolis, IN

Free Admission, Raffle, Interactive Activities, Disability Information. Additional Information: LACD@ cityoflawerence.org

IRCA FAMILY AUTISM SUPPORT WEBINAR (ONLINE)

March 6 at 6:30 p.m.-7:30 p.m. Incorporating Structured Communication Strategies into Everyday Life

Gain ideas for structured communication support that can be used throughout a person’s day to encourage a variety of communication functions, including gaining attention, requesting, commenting, and social conversation, and also supporting generalization.

Presented by: Amy Moore Gaffney, M.A., CCC-SLP

Educational Consultant, Indiana Resource Center for Autism

Indiana Institute on Disability and Community, Indiana University. Register. https://iu.zoom. us/webinar/register/WN_ tbiwz8XzQG25rdcjWI53Pg

ROCK YOUR SOCKS WORLD DOWN SYNDROME DAY, SPONSORED BY GIGI’S PLAYHOUSE

March 21 at 6 p.m.

5909 E. 86th, Indianapolis, IN 46250 Grab your best ‘80s gear, and dance the night away to raise awareness and celebrate our loved ones with Down syndrome on World Down Syndrome Day. There will be dancing, snacks, crafts, a photo booth, a costume

contest, and more! #WDSD23 #LotsOfSocks

https://gigisplayhouse.org/ indianapolis/rock-your-socks/

PATINS TECH EXPO 2023 WITH IN*SOURCE SAVE THE DATE FOR APRIL 20, 2023!

returns to Carmel, IN. Registration is open until March 29, 2023, at midnight. https://patinsproject.org/ services/conferences/tech-expo This event is open to all interested Indiana administrators, teachers, family members, advocates, students and preservice teachers/grad students. It is your opportunity to preview assistive and accessible technologies and services, meet with vendors and experts of resources designed to promote inclusion, to comply with federal and state mandates and learn about accessibility and technology supports for all of your students and families. Throughout the day, visit the live Exhibit Hall and attend vendor presentations to earn up to 4 Professional Growth Points/ Contact Hours.

42 March 2023
GIGI’S PLAYHOUSE

Are you or your loved one living with a disability that adds challenges to daily activities, like getting from one room to another, using the bathroom, or ascending the stairs? Specialized Home Care Services strives to provide a broad range of products that’ll make your daily life easier and more manageable!

Ramps - Grab Bars & Handrails - Automated Entry - Walk-In Tubs - Roll-In Showers - Vertical Platform Lifts - Straight & Curved Stairlifts - Door Widening - Accessible Remodeling

ADA is not one-size-fits-all, our home modifications are customized to fit your specific needs. We can help you find affordable home modifications. We also provide a number of unique goods for medical purposes that aren’t normally covered by insurance.

Contact us today

to arrange for your ADA home modifications. Specialized Home Care Services proudly serves all of Indiana. Our staff has a medical background and will complete the work on your home with special consideration to your specific needs.

Special Needs Living Indy 43 (888) 506-4182 | specialized4u.com 621 N Central Ave, Connersville,
47331 specializedhomecareservices@gmail.com.
IN
9885 E. 116th Street, Suite 100 | Fishers, IN 46037 babytoothcenter.com We Love Kids! 5-Star Rated Pediatric Dentistry 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 most dental insurances and Medicaid accepted FINANCIAL and TAX ADVANTAGED Services to help manage ordin ary and tax advantaged investagement, 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
44 March 2023

SPECIAL NEEDS LIVING INDY FAMILY FUN DAY AT PRESS PLAY GAMING LOUNGE

FOAM WARS AT PRESS PLAY

Join Us! Family Fun Day at Press Play Gaming Lounge!

When: March 14

Time: 6 p.m. to 8:30 p.m.

Where: 1004 E. Main St., Brownsburg, IN 46112

Link to Register: https://www. eventbrite.com/e/ special-needsliving-social-atpress-play-gamingtickets-529785973107

VIRTUAL REALITY AT PRESS PLAY

Our virtual reality stalls are uniquely made for awesome solo games that use new and completely wireless virtual reality technology. We do virtual reality in Indiana! We have a team of virtual reality gaming reps ready to assist in getting you hooked up and ready to enjoy virtual reality. Visit Press Play to jump into virtual reality today!

Experience Foam Wars (Nerf) like no other! Grab a group of friends and battle it out in “Conquer the Flag.” Go a full three rounds of Foam Wars with Nerf weapons of your choice! Get to Press Play and sign up today!

THREE-POINT CHALLENGE AT PRESS PLAY

Ball is life at Press Play. Sign up today to play in a three-point challenge! Players take 12 shots in 45 seconds. Players that score at least 10 points will win a prize! Also, ask about the Mega Challenge, where you will go a full three rounds in an attempt to win an Xbox One or 50” Screen TV!

BEAM FOR KIDS AT PRESS PLAY

Bring the little ones out to burn some energy in our fun interactive BEAM room. They get to play interactive games that allow them to jump on balloons, fruits, and much more! A virtual playground that makes entertainment for all lively, hygienic, educational and above all, a ton of fun. The little ones in your family will love stomping and jumping around on BEAM!

ARCADE CORNER AT PRESS PLAY

What is gaming without an arcade? Bring the family in to check out our mini-arcade. Our arcade is small but growing every month with new and fun, affordable arcade games. Check out the arcade pricing below.

GAMING AND SPORTS ENTERTAINMENT AT PRESS PLAY

Bring the family out to dine in while watching sports and playing free games of Xbox on a 75” screen TV. Our gaming pods are perfect for family gatherings and have servers that are ready to serve you! Reserve

your TV pod today! Move around from the pod and take advantage of virtual reality, Nerf (Foam Wars), three-point basketball challenge, the mini arcade or BEAM (interactive play floor)

STADIUM FOOD AT PRESS PLAY

Enjoy mouth-watering stadium food at Press Play. We have a delicious variety of stadium food that you may be familiar with! Chicken wings, gourmet pizza, chicken chunks, pickle fries ... and more ...

45 SAVE THE DATE
Scan
to Register
Special Needs Living Indy 47

THE RIVARD

Meet the Rivard family: Sam, Meghan, Anna, 9, Micah, 7, and their canine companion, Neno, of Westfield, IN. Sam is an IT Project Manager for the City of Westfield; Meghan is an instructional assistant for Westfield Washington Schools, where Anna is in third grade, and Micah attends full-time ABA therapy.

They enjoy family dinners, board game nights, church life, Great Wolf Lodge (their family fave) and exploring local nature preserves and playgrounds. As it is for many special needs families, especially active families like the Rivards, Meghan says they’ve had to endure their share of looks and comments over the years — some because Micah has nonverbal autism, some because Anna is Taiwanese and Micah is Chinese; theirs is a story of adoption.

“We are a multi-racial family, as well as a special needs family, so we do get looks and sometimes comments when we are all out together,” said Meghan. “I’ve learned many people aren’t educated about autism or adoption, so we try to use those opportunities as teaching opportunities if possible.

“I wish I would have fully realized what I do now,” she reflects. “That it’s OK for your family not to fit in the ‘typical’ box.”

ADOPTION

Ever since Meghan can remember, she has wanted adoption to be a part of her story, and the deal was sealed when she met her husband, Sam.

“When we were dating, Sam and I both often spoke about adoption and how much we both admired it,” said Meghan. “We adopted our daughter through domestic adoption in 2013 and Micah through international adoption in 2018.”

Anna is Taiwanese and was born in the U.S.; the Rivards have an open adoption with Anna’s birth parents, with occasional visits and phone calls, whereas Micah’s adoption was very different. As it is in many international adoptions, Meghan explained, they were given very little information on Micah, and zero information on his biological family, only that he had spent his first three years

48 March 2023
FAMILY
MEET

SAM, MEGHAN, ANNA & MICAH

We are a multi-racial family, as well as a special needs family, so we do get looks and sometimes comments when we are all out together,

Special Needs Living Indy 49 FEATURED FAMILY

of life in an orphanage and a hospital in Shanghai, China.

“We knew he had a heart condition and had heart surgery as a baby,” said Meghan. “But we were not aware of any other characteristics that might lead to an autism diagnosis.”

Meghan, Sam and Anna all traveled to China in 2018 and met Micah in the orphanage, and it’s a moment none of them will ever forget. “I’ll always remember them carrying him into the room and handing him to me,” said Mom. “I absolutely love sharing about adoption. But I’m going to be honest, it’s a long and hard process; it’s a rollercoaster of emotions, but so worth it.”

The family soon learned that Micah had other challenges besides his heart condition. “Micah was 3 years old, and he could not walk and still ate from a bottle,” said Meghan. “He also was not using any words for communication. Communication initially was pointing at items and getting very frustrated when we didn’t know what he wanted or needed. He was also fixated on swinging toys and wouldn’t give much eye contact.” This was when the family started to suspect Micah may have autism.

Shortly after they arrived home, Meghan and Sam put Micah in feeding and speech therapies, and a year later, he was officially diagnosed with nonverbal autism.

“When we were going through the diagnosis process, it can be overwhelming and, honestly, discouraging,” said Meghan. “But someone told me that getting a diagnosis for your child is just a word. It doesn’t change who they are.”

AUTISM

With help from Medicaid and the Medicaid waiver, Micah receives full-time applied behavior analysis therapy, or ABA, in-center, where he receives occupational and speech therapies each week as well. Meghan said it had been almost two years since his team introduced an augmentative and alternative communication (AAC) device to Micah so he could communicate. AAC devices are handheld tablets (typically an iPad)

programmed with a particular language software, allowing the child to pick the written word or picture, and the word is spoken aloud.

“It’s definitely another moment I won’t forget,” said Meghan. “It’s been great seeing him learn and being able to tell us what he wants or needs. While there are definitely still frustrations, having a way to communicate with us has been so helpful. His AAC device has opened so many doors for him to share and communicate what he wants, which has allowed his frustration to get much lower.

“While it’s hard not to at times, I don’t want to compare him to any other 7-year-old and think he should or shouldn’t be doing something,” said Mom. Thankfully, one less worry for Sam and Meghan is Micah’s heart.

“Since being home, Micah is followed by specialists from Riley Children’s Hospital cardiology,” said Meghan. “He is thriving and is expected to have the same experiences as his peers. We

cannot thank Riley cardiology enough for their fantastic care.

“Micah has come so far since the day we met him in China. He has overcome so much since that time as well. I love the eye contact he always gives when communicating with us. I love how affectionate and goofy he is at times. I love how he is starting to follow Anna and wanting to do what she is doing.

“Micah likes to be a ‘typical little brother’ and tease Anna to get her attention, and she is extremely patient with him,” gushed Mom. “ There are times that Anna wishes he could play differently with her, but she is a great teacher and friend to him.”

As for what the future holds, Meghan has the same goals as any mother does. “I want my children to be happy and healthy. I want them to be as independent as possible, whatever that might look like for both of them. I want them both to know they are loved, and we will advocate and do anything we can for them.”

50 March 2023

“Be open to a lot of paperwork to fill out. Be open to something taking longer than expected. But also be open to falling in love when you get the first pictures and information about a child’s profile. Be open to opening your heart.”

Sam and Meghan met online through eharmony. com. “I know some people find it strange,” laughed Meghan,” but we met online while we lived in Indiana and Ohio. We talked on the phone for a while, then dated distantly for two years before getting married.”

“We really enjoy this magazine,” said Meghan,” and are very thankful for this opportunity to share our story.”

Sam enjoys the Indianapolis Colts, and Meghan enjoys watching the Ohio State Buckeyes.

Sam and Meghan look forward to their rare date nights, thanks to Waiver-supported respite services.

The family enjoys watching Disney movies together. Micah’s favorite movie is Up ; Anna’s is Home Alone ; Mom’s is White Christmas ; and Dad’s is Oceans 11

The whole family loves eating out at Mexican restaurants and all things Italian. Micah’s fave spot is the Old Spaghetti Factory.

The Rivard family enjoys attending their church, where they are blessed to have a special needs children’s ministry. “There are only a couple of churches in the area with a ministry, which is sad to me,” said Meghan. “It is missing out on so many families being able to attend church. Micah would not be able to go into a typical Sunday school room, so having this ministry allows us to go to church. They also plan and offer different family events, such as respite nights, which are such a blessing.”

Early Childhood Music Classes Sign & Sing Virtual Classes

Music Therapy can help individuals of all ages and abilities, including those with:

Alzheimer’s Disease and Dementia ° Autism ° Cerebral palsy

Developmental Disabilities ° Down Syndrome

End-of-life care (Hospice) ° Intellectual Disabilities

Mental health ° Neurological disorders

Psychiatric disorders ° Rehabilitation

Special Needs Living Indy 51 7502 Madison Ave, Indianapolis, IN 46227 (317) 829-6654
dynamicmusicservices.com Music Therapy & Wellness

SCRIPTING. COULD HE BE A GESTALT LANGUAGE PROCESSOR?

"word babies"

84% of autistic people are gestalt language processors. Positive Interactions Therapy can help your child develop through all 6 gestalt language stages in order to produce self-generated language.

SCAN TO LEARN MORE

Learn language by acquiring single words, then 2 word combos, then 3, and so on...

Single words carry individual meaning/ serve as single units.

Intonation develops as longer sentences are produced.

"intonation babies"

Learn language by using "chunks" of words (one or many words) that serve as a single unit meaning.

Single word production is a later stage of language development.

What we often see as "typical" language development.

Language is rich in intonation.

Less frequently talked about but VALID and common form of language acquisition.

52 March 2023 317-518-0627 POSITIVEINTERACTIONSTHERAPY.COM @POSITIVEINTERACTIONSTHERAPY
ECHOLALIA AND
ANALYTIC LANGUAGE GESTALT LANGUAGE VS
Special Needs Living Indy 53

We have been blessed to have Tendercare for the past 9 years, and they have always been very caring and reliable. Our nurses have been like family to us.

– The Nestas (Tendercare family since 2002)

Do you have a child with disabilities? Want to be paid as a Tendercare Family Caregiver?

Come join Top workplace Tendercare Home Health services as a family caregiver! You or a family member can work as an RN, LPN, or Home Health Aide (free HHA training provided) to work with your child! We provide 24/7 nursing support, training by RN case managers and expert clinical staff to support your needs. Tendercare has been locally owned and operated for the last 30 years in Indianapolis. Call today at 317-251-0700

• Specialized, in-home nursing care by Registered Nurses (RNs) and Licensed Practical Nurses (LPNs)

• In-home physical therapy

• In-home occupational therapy

Our comprehensive adult home care and pediatric home care services include:
• Speech therapy
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251-0700 6308 Rucker Road, Suite D tchhs.net
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5051 New Centre Dr Wilmington, NC 28403

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