Special Needs Living Feb 2023 Issue

PHOTO BY 21 VINES PHOTOGRAPHY

More than a Trampoline Park

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!

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

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

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

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.

THIS MAGAZINE IS

– FOR YOU – BY YOU –

TO SUPPORT & CONNECT YOU

HERE IS HOW YOU CAN BE INVOLVED

HAVE A STORY TO SHARE

Would you like to share a story in an upcoming issue of Special Needs Living? We want to hear from you. To share a story or to nominate someone else to be in an upcoming issue of Special Needs Living, e-mail your story ideas or nominations to SpecialNeedsLivingIndy@n2pub.com.

To view several story options with quick links to answer questions and upload photos go to Linktr.ee/Community.Stories

Accomplishments/Achievements/Milestones

LOOKING

TO CELEBRATE ALL SPECIAL NEEDS INDIVIDUALS

Some accomplishments and milestones take years ... We want to recognize you/them! Are you or your child celebrating a birthday, milestone, achievement, or accomplishment? We want to recognize you –email us at SpecialNeedsLivingIndy@n2pub.com.

CALLING ALL 501C3 ORGANIZATIONS THAT SUPPORT THE SPECIAL NEEDS COMMUNITY

Each month we will highlight a nonprofit for free to let the community know more about how they support and impact families and individuals with special needs. Do you run a non-profit or know of one that supports the special needs community? Email us at SpecialNeedsLivingIndy@n2pub.com.

LET’S GET SOCIAL

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

FOR ADVERTISING:

Do you run a business that supports the special needs community and is looking to advertise in Special Needs Living magazine? Email Jamie.McCabe@n2pub.com.

HIGHLIGHTING ALL SPECIAL NEEDS BUSINESSES

Do you have special needs and run a business? We will highlight all those with special needs who run a business for free – email us or go to Linktr.ee/Community.Stories and click on (Special Needs Living – Business Profile Q&A).

Would you like to share a story? Scan here to submit a story to be in a future issue of Special Needs Living!

Scan here to view the past issues of Special Needs Living!

Lincoln Head

Zachary

The

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

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

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

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 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

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 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

MEET THE SPECIAL NEEDS LIVING INDY TEAM

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

THE INDIANA AUTISM ALLIANCE

BY ANGIE ARLINGTON

Part of IAA’s mission is to educate the entire community. “We want to educate people outside of the bubble about the different ways an individual on the autism spectrum processes tasks that they deem simple. We push to show how daily life skills are a major foundation of being able to mainstream a family member.”

The Indiana Autism Alliance (IAA) was founded in 2008 by Scott Garner. “Our mission is to connect special needs families in the tri-state area to as many of the outside resources as possible. We want to help these families to find anything to improve the quality of life for individuals on the spectrum. We strive to share the most current information that the IAA and our partners can give on current and future treatment of autism worldwide.” Scott explains.

IAA also helps special needs families steer through the mass of paperwork involved with the administration of Article 7 used in school systems. “We try to explain the real advantages and disadvantages of the Article 7 document as a whole. We sit down with the family and administrators to help fine-tune the learning package for each child. This allows for a more centralized learning experience.”

IAA holds fundraisers and has local companies help sponsor special needs families’ outings. “Our events help families relax and enjoy time together.” As a nonprofit, these businesses help support all of the initiatives of IAA to support families.

IAA’s website is a treasure chest of resources for families. “Once a child is diagnosed with an autism spectrum disorder, it is important to

begin to identify needed services and resources. Each child with an autism spectrum disorder is different, and each family will have different needs. Examples of services that individuals and families will require include financial assistance programs, advocacy, parent support groups, sibling support and information, respite care, medical care, and training. Accessing services will differ from community to community,” Scott explains.

ONLINE SUPPORT GROUP: IAA will be starting an autism support group for families and caregivers of individuals with an autism spectrum disorder. The meetings will take place over Zoom and will be held on the third Thursday of the month from 7 to 9 p.m. To be put on the zoom list, send an email to indianaautismalliance@gmail.com.

Scott sums up IAA’s 14 years of existence: “The best way to describe what we are about is as simple as this — The Indiana Autism Alliance is about FAMILY. It is about helping make things just a little easier in life. We Hope.”

We Love Kids!

• providing tools to use in future appointments

• establishing at-home dental hygiene routines

• preparing you and your child to work through fear and anxiety

Call 317-842-8453 to book an appointment.

9885 E. 116th Street, Suite 100 | Fishers, IN 46037 babytoothcenter.com

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.

Scott Garner

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/ jamie-mccabe/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 a 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.

Local Events

BY CHRISTIA WOODFORD

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.childrens museum.org/visit/hours/access-pass.

MUSEUMS

The Children’s Museum of Indianapolis

Various Events

Feb. 1- Feb. 28

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 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.

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

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 admission and may stay as long as you wish.

Various events

Feb. 1-Feb. 28

13400 Allisonville Road, Fishers, IN 46038

Phone: 317-776-6000 or 800-966-1836 https://www.connerprairie.org/ events/list/

SPORTS Indy Fuel

Feb. 4, 5, 10, 24, 25, 28

Indiana Farmers Coliseum, 1202 E. 38th St., Indianapolis, IN 46205 https://www.indyfuelhockey.com/ news/2022/5/fuel-announce-2022-23 -regular-season-schedule

Indiana Pacers Feb. 2, 3, 5, 10, 13, 15, 23 Gainbridge Fieldhouse 125 South Pennsylvania St., Indianapolis, IN 46204 Box Office: 317-917-2727 https://www.nba.com/pacers

FAMILY FUN 2023 Monster Jam Feb. 4, 2023, Gates open at 5:30 p.m., event starts at 7 p.m. Feb. 5, 2023, Gates open at 1:30 p.m., event starts 3 p.m. Lucas Oil Stadium, 500 S. Capitol Ave., Indianapolis, IN 46225 https://www.lucasoilstadium.com/ event/monster-jam-2/

Special Needs Living Indy Bowling Day at Royal Pin Woodland Bowl Feb. 21, 2-5 p.m. Royal Pin Woodland Bowl 3421 E. 96th St., Indianapolis, IN 46240 Come out and enjoy a fun afternoon of bowling with other families in the special needs community! There will be a variety of families in the community, from those who have never bowled before and this is their very first time to those who are very experienced. You will get to enjoy bowling with other families and individuals with special needs, build relationships and have some fun bowling. Space is limited; please RSVP. We look forward to seeing you there.

Indianapolis Zoo

Various events are scheduled daily Check the calendar for events. https://www.indianapoliszoo.com/ visit/daily-schedule/ 1200 W. Washington St., Indianapolis, IN 46222 317-630-2001

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

THE ARTS

Beef and Boards

“Clue” Dec. 28 through Feb. 5 Footloose Feb. 9-March 26 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 sightreading, part-singing, 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/

Gigi’s Playhouse

Various classes during the week. 5909 E. 86th St. Indianapolis, IN 46250 317-288-8235 indy@gigisplayhouse.org

EVENTS

Autism Community Connection

IRCA Family Autism Support Webinar (Online)

Feb. 6, 2023, at 6:30 p.m.-7:30 p.m.

ABA: What It Is and What you Should Expect from a Provider?

Applied Behavior Analysis (ABA) is often pursued by family members for their children on the autism spectrum. This presentation will describe what ABA is and is not and the questions family members should ask when interviewing ABA providers to ensure their child receives the best services possible.

Presented by: Cathy Pratt, Ph.D., BCBA-D

Director, Indiana Resource Center for Autism

Indiana Institute on Disability and Community, Indiana University

Follow this link to register. https:// iu.zoom.us/webinar/register/WN_ eq265nnCSnOacMYkBnVHSA

ABA: What It Is and What You Should Expect from a Provider Feb. 6, 5:30 p.m.-6:15 p.m. Indiana Institute on Disability and Community (IIDC), Indiana Resource Center for Autism

Online for Family or Caregiver/ Professional https://iu.zoom. us/webinar/register/WN_ eq265nnCSnOacMYkBnVHSA

Presented by: Cathy Pratt, Ph.D., BCBA-D, Director, Indiana Resource Center for Autism, Indiana Institute on Disability and Community, Indiana University

Applied Behavior Analysis (ABA) is often pursued by family members for their children on the autism spectrum. This presentation will describe what ABA is and is not and the questions family members should ask when interviewing ABA providers to ensure their child receives the best services possible.

ISU Nonprofit Leadership Program Feb.9, 2023, 6:30 p.m.-8 p.m. Ricks Smokehouse 3102 Wabash Ave., Terre Haute, IN 47803

GiGi’s Playhouse Indianapolis Annual I Have A Voice Gala

Our theme for 2023 is CONNECT Saturday, Feb. 18, 2023, 6 p.m.

Indiana Roof Ballroom, 140 West Washington St., Indianapolis, IN 46204For additional information https://gigisplayhouse.org/ indianapolis/gala-indy/

Warsaw School Corp

Feb. 21, 2023, from 6:30 p.m.-8 p.m. Warsaw High Community High School 1 Tiger Lane, Warsaw, IN 46580

Joseph Maley Foundation hosts Game Night: Presented by the Junior Board of Directors Feb. 24, 2023, at 6:30 p.m.-8:30 p.m.

The Riviera Club 5640 N. Illinois St., Indianapolis, IN 46208

Game Night is a family-friendly event open to anyone in Grade 6 or above. Board games, giant Jenga, euchre tournaments and more await you and your family.

https://www.josephmaley.org/event/ game-night-presented-by-the-juniorboard-of-directors/

Link To Learn Behavior Therapy is hosting a Sensory Play Day event Feb. 25, 2023, from 10:30 a.m.-noon 14701 Cumberland Road, Suite 200, Noblesville

It is completely free, and we will have Story Time, Movement and Music, Crafts and Games. Register at https://www. linkedbehavior.com/.

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 UMBRELLA CENTER

BY MARIA SMIETANA

who always has a spreadsheet handy, or dad-joke ready for any situation.”

Krissy earned her B.S. in Speech, Language, and Hearing Sciences at Purdue University. When she graduated a semester early, “I was looking for a job to hold me over until my lease was up on my apartment,” she said. “I found a listing for an autism therapist on Craigslist and 10 years later, I’m still in the ABA field.”

For Krissy Wippermann and Jenny Tillotson, founders and owners of The Umbrella Center, having their family members as business partners is the most natural thing in the world. The Wippermanns grew up in Center Grove, just south of Indianapolis, and have always been there for each other.

“We were a big, eccentric family that prioritized fun and growth over what the neighbors thought,” they laughed. “Our mother, Holly, was an educator who was known for loving all her kids and for her over-the-top nature. She raised all four of us to laugh loudly, take care of ourselves, and take care of others. As an English teacher (at Greenwood High School) she valued education, but she also used her role to support her students in a non-academic sense.”

Their dad, David, was a general surgeon at Johnson Memorial hospital, but was never too busy for his family. As Krissy put it, “our father is a physician turned Dad-Of-The-Year

After Holly’s untimely death in 2019, Krissy decided it was time to move back to the Indianapolis area where Jenny and the most of the family reside. “My sisters and I have always been close, and losing our mom brought us even closer together,” she said. “Through the grieving process we all started to dream about our futures again and they helped me see that my next step was to open my own ABA center. Once I made the decision to take on this challenge, my family joining in was just natural, because that is what we do for each other. As we got more serious about making this happen, everyone started playing an active role and it very quickly turned into a Wippermann family business.”

As the ABA and autism expert, Krissy runs the clinical side of The Umbrella Center. Jenny manages the office and handles insurance billing. Katie, who became a physician like Dad, is the marketing, networking, and strategy advisor. Laurie, the sister who followed Mom into education, helps with relationships with the schools,

assists with client’s IEP meetings, advises on transition plans, and ensures that the families are supported in their education journey as well as their ABA journey. Dave (Dad), who is now retired from medicine “helps us with all the business stuff,” Krissy said. “He checks every number and legal document and always reads the fine print!”

The Umbrella Center provides ABA services regardless of age, severity of problem behavior, or intensity of services required, which sets it apart from many other ABA centers. “We are finding that we get a lot of clients who have fallen through the cracks of other systems for whatever reason,” Krissy said. “We also have no intention of growing outside of the Garfield Park neighborhood. We chose this area due to the need here and because we wanted to be part of a community. We have a large building that we will grow into eventually but will never grow out of. We love that we are within

walking distance of Garfield Park’s beautiful arts center and conservatory, as well as a public library and The Tube Factory,” Jenny added.

Frequently asked about where The Umbrella Center name came from, Krissy admits that she’s been obsessed with umbrellas forever. “I think it started with art [class],” she said. “They started popping up whenever I was doing art projects or even just doodling.” “When thinking about what our center would be called and our dreams of what it would be, we tried to think big picture. Yes, our main gig and top priority is ABA Therapy. But we want to expand services for our kiddos and for our community! It all fits under the umbrella,” Jenny said.

Krissy also has always associated umbrellas with her family. “In fact, I have a tattoo of an umbrella with the initials of my family members hidden within the design,” she said. “My family has been there when I need them, and I trust that they will always be there to protect me from any storms that come my way.”

As a business, The Umbrella Center tries to put on regular community events. “We do this to bring

some family friendly fun to the Garfield Park neighborhood and also to provide our clients with social opportunities. We put on Trunk or Treat in October, we helped pass out Thanksgiving meals for over 150 families in need, and had a Parents Night Out in December. We also have a food pantry at our center that is open every other Thursday,” Jenny said.

Krissy and Jenny encourage families and individuals affected by autism to reach out and find their community: “Find the people who will help you, laugh with you, cry with you, and advocate for you.”

Business Contact Information

The Umbrella Center 1061 E. Southern Ave Indianapolis, IN 46203 463-701-0909 info@theumbrellacenter.com www.theumbrellacenter.com

A Picture is Worth a Thousand Words

Stories shared simply through images: meet Ibram

First day of pre-K, getting on the “Big Boy bus”!

Would you like to submit photos to be in this article in a future issue of Special Needs Living Indy?

Email specialneedslivingindy@n2pub.com.

Ibram Sarkas

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!

BY ANGIE ARLINGTON

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

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.

PASTOR’S CORNER

BY PAUL HATHCOAT

community, people often eye you as if you had dropped in from another world, smile tolerantly and hope you change the subject. Good, sensible, Christian people. They fear that you’re going to tell them they have to sell all they own, move to a farm, wear bib overalls and raise peanuts. Or that they must abandon their fertilized lawns and move to the inner city. Because they misunderstand the idea of community, many Christians don’t want to think about it at all. Let’s chat about the idea of community and make a list of the ways in which it can serve our lives well from a pastor’s perspective.

To avoid thinking about community simply because we misunderstand it will deprive us of one of God’s greatest gifts. The idea of community is, in a sense, from another world, a world very unlike our own. But it is neither from the world of communes in Vermont nor from the placid world of cookies and tea Christians share before they rush back to their isolated lives. Community is from the world as God wants it to be. It is the gift of a rich and challenging life together, one that we need and can receive with joy.

Christian community is simply sharing a common life in Christ. It moves us beyond the self-interested isolation of private lives and beyond the superficial social contacts that

us instead to commit ourselves to life together as the people of God.

We know all too well that maturity takes time. We know less well that it also takes our sisters and brothers in Christ. It’s a process that is revealed in the “each other” language of the New Testament: Love one another, forgive each other, regard each other more highly than yourselves. Teach and correct each other, encourage each other, pray for each other, and bear each other’s burdens. Be friends with one another, kind, compassionate and generous in hospitality. Serve one another and submit to one another out of reverence for Christ. This list just scratches the surface, but it is enough to remind us that we need the community of faith to grow up in Christ.

Christian community is the place of our continuing conversion. Its goal is that, individually and together, we should become mature, no longer knocked around by clever religious posers, but able to stand tall and straight, embodying the very “fullness of Christ” (Eph. 4:11-16). Here are some statements for us all to think on, regarding the ways in which living in community can infuse our lives with meaning and joy. Think through each of the statements and test it against your own idea of community. The worth in this article is in the testing of your own community faith.

Christ’s love feels like.

• A SOURCE OF ACCOUNTABILITY AND GUIDANCE: A community shows us where we need to grow.

• A PLACE TO PRAY AND WORSHIP: Praying and worshipping together creates a workshop of love.

• A PLACE TO SERVE: Self-interest is stripped away when we live connected to others.

• A WITNESS TO THE WORLD: Christian communities testify to the love and counsel of the Lord.

The practice of Christian community, quite simply, makes the gospel a lived reality. It embodies a specific, personal way of life together in Christ. It strengthens us to live the life to which we are called; it conveys God’s life and power to the world at large. And it is necessary. It is not to be feared but welcomed. The risks don’t go beyond those it takes to follow Jesus. The reward is to enter into life as God intended it to be lived from the beginning. How could anyone pass that up? Bless you on your journey to true community.

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.

Is Your Child a Gestalt Learner?

Let’s talk about Gestalt language processing

BY JULIA WALKER M.A., CCC-SLP

Did you know there are two ways to develop language as a child? Analytic language development is the kind of language development taught in college to teachers and speech-language pathologists and the kind of development one reads about in parenting books. Analytic language processors learn language by acquiring single words, then two-word combinations, then three- to fourword combinations, and so on. Single words carry individual meaning and serve as single units. Gestalt language development is another natural way to learn language.

Gestalt language processors learn language by using chunks of words that serve as a single unit (e.g., “To infinity and beyond”). They are considered “intonation babies” because they identify with the sound of the language they hear rather than the words. At least 84% of autistic people learn language in this manner (Rydell, P. and B. Prizant (1995). However, one doesn’t have to have a diagnosis of autism to develop language as a gestalt processor.

Let’s talk about how to identify gestalt language learners. There are four distinct speech types to look for, and a child may use only one or two or all of them.

LONG SCRIPTS: These are the easiest children to recognize. They use delayed scripts they may have heard from videos, books, movies, TV shows, YouTube videos, etc. It may be used in and out of context. For example, they say “To infinity and beyond” every time they want to watch Toy Story or any time they want to watch a video in general.

SINGLE WORDS: These children can be difficult to recognize. They can label or name many items and may respond with single words to questions or prompts, but these single words are stuck. They are unable to combine these single words with other words to expand their utterances. For example, “cow” is used every time they see a large animal or even to label grandpa, who raises cows. They have

picked up this single word to have a much larger meaning and now use it to label every animal. They cannot build upon this single word to create “big cow,” “brown cow,” etc.

RICH INTONATION: Children who use rich intonation may be difficult to understand, but the intonation they’re using gives it away. If you tune in, it may sound like a line from their favorite TV show, a song, etc. For example, “Happy birthday!” The child says this with the same intonation and high emotion that is typically used when saying/ singing this during a party. They often use this gestalt to initiate interactions.

UNINTELLIGIBLE LONG STRINGS

OF LANGUAGE: This is the trickiest to determine. These children are frequently said to be using “jargon.” But if you investigate and tune in to what they’re consuming every day (TV shows, YouTube videos, songs, etc.), you can hear that these long strings of unintelligible language are actually a gestalt. The reason their language is unintelligible is that they haven’t motorically caught up yet to these long strings of language and have a harder time hearing the word unit, so it all sounds like a big jumble to those who don’t know or understand gestalt language processing. For example: “Igonnagooutside.” When it’s pronounced like this, it is hard to understand, but they are repeating a line they’ve heard in their favorite video.

If you feel that your child is a gestalt language learner, it would be beneficial to find a speech pathologist/speech therapist who is trained and certified in gestalt language learning, also known as Natural Language Acquisition framework. An assessment would then be initiated by the therapist by collecting spontaneous language samples during child-led, play-based interactions and also from spontaneous language samples collected at home. The language samples are examined to determine which gestalt level type the child is primarily using, and therapy goals are determined based on that information. Ongoing sessions are also play-based and child-led, and within each session, language is modeled by the clinician at the appropriate stage of gestalt language development. As the child hears the models, they may store them in memory for later use as necessary. The goal of the Natural Language Acquisition framework is to help the child develop through each stage to the eventual use of selfgenerated language. However, Scan to watch stage 1 Gestalt

it is important to note that most gestalt language learners may occasionally revert to the use of scripts when they become stressed or otherwise dysregulated. When children are treated by well-meaning therapists who don’t understand NLA and instead use analytic language approaches, the child may get stuck in a stage and/or develop self-generated language more slowly than if they had seen an NLA-certified therapist.

This article is based on information that can be found on Meaningfulspeech.com, including research notes and more video clips for each gestalt level as well as a NLA trained SLP registry. If you are interested in learning more about receiving therapy from an NLA-certified speech therapist, please contact positiveinteractionstherapy@gmail.com or follow Positive Interactions at https://www.facebook. com/juliewalkerslp or https://www.instagram.com/ positiveinteractionstherapy.

Julia Walker M.A., CCC-SLP

Meet Zachary Curtis

BY ANGIE ARLINGTON

“My name is Zach. I’m 27 years old, and I have autism. I live independently in my own apartment. I work at First Internet Bank. I’ve been employed with them since March 2017,” Zach Curtis shared.” His hobbies are reading, writing and running on a treadmill every day after work. He enjoys spending time with his friends, family and co-workers.

Zach’s road to becoming a self-advocate began years ago. “My freshman year of high school got off to a rocky start,” he recalled. “I didn’t want to go to school. School was really bad and at times I struggled making friends and at times was bullied by kids and adults that didn’t understand me or what Autism meant. Until a self-advocate advocates for themselves and others. Being a self-advocate has given me more self-esteem and self-confidence. It has helped me to get more speaking engagements and opportunities for Best Buddies and the other organizations I belong to.”

For many years, Zach has actively had leadership roles in Best Buddies, Special Olympics, Aktion Club, Thrive, Trinity Fellowship, Joseph Maley Foundation and the Arc of Indiana. “I enjoy speaking in front of people and educating parents, students, teachers and business people about what it’s like living with autism.”

Zach is active in his Church and was raised in a devoted strict Christian Household. He shares his wisdom for others, “You can do it, believe in yourself, and practice makes perfect. It is not always easy to do things out of your comfort zone. When I was little and much younger change was something that was difficult for me. As I got older I learned to reign it and suck it up and deal with it even though I deal with change better but still kinda have my days where I prefer things according to plan, but being a Self Advocate will allow you to grow and become a better you!” Thanks to my mother; Zenobia Curtis, she is my strongest advocate!

Zach’s goals for the future? “I’d like to go back to school to get my diploma. I want to get my driver’s license and have my own car. I also see myself being promoted within my company and making some good money.”

Zachary Curtis

MEET THE SCOTT FAMILY

BY MARIA SMIETANA

For Fishers residents Taylor and Vince Scott, patience, planning, and flexibility are the keys to managing life with a special-needs child. Both are full-time elementary school teachers, so they’re no strangers to dealing with children. But when their first child, Carter, was born with Angelman syndrome, the Scotts “knew we had to make adjustments to our work-life balance,” Taylor said. “The biggest commitment we make to our family is that we leave work at work and we give our children our full attention while at home.”

First described by British physician Harry Angelman in the 1960s, clinical characteristics of Angelman syndrome include severe speech impairment, movement and balance disorders, sleep disturbance, serious delays in intellectual development, and often, seizures. Interestingly, children with Angelman syndrome (AS) exhibit an unusually happy demeanor, are easily excitable and love to be in or around water.

According to the National Organization for Rare Disorders, AS occurs in about 1 in 15,000 births, but many cases are probably misdiagnosed because of the overlap in characteristics between AS and disorders such as autism, cerebral palsy, Prader-Willi syndrome, and many others. AS is caused by an abnormality in the UBE3A gene found on maternal chromosome 15. Diagnosis usually occurs between ages 1 and 4 since characteristics of AS are not obvious at birth.

Carter, now 6, attends kindergarten and is in the life skills class in Hamilton Southeastern Schools. Before kindergarten, he attended First Steps. “They were a great resource for Carter prior to starting school,” Taylor said. “He LOVED his therapists, and they did so much to help him reach his full potential.”

On his 4th birthday, Carter became the owner of two bunnies, with whom he’s made a deep connection — he even reads to them. He named one

George after his favorite show, Curious George. The other is Snowflake, a nod to Christmas, which is Carter’s favorite holiday. Carter’s little brother, Connor, likes to help him take care of the bunnies, and both boys enjoy playing with them. The family also has Wrigley, a Sheltie who has been with Vince and Taylor since before they were married.

The degree of movement and balance difficulty can vary greatly in children with AS. Carter learned to walk at a normal age, and Taylor is very excited that he has also mastered running, jumping and climbing stairs.

“He has accomplished so many milestones over the years,” she said. “In the past two years, he has gone from being nonverbal to adding five words to his vocabulary. He has worked hard to learn how to use his AAC device to communicate and advocate for himself. He truly shows us day after day how determined and unstoppable he is.”

Living in Fishers, which the Scotts have called home for nine years, has proven to be beneficial in

Taylor, Vince, Carter and Connor

so many ways. “We really appreciate the acceptance that our neighbors have shown Carter. He makes friends everywhere he goes, and we love how excited those in our community are to see him when we are out,” said Vince.

“Our community has allowed us to enjoy many of our favorite leisure activities without much in the way of adaptation. We have been blown away by how accommodating our city is to those with special needs,” Taylor added. “Some of our favorite parks are Richey Woods, Flat Fork Creek, Holland Park, and Conner Prairie. We simply try lots of different parks, and those our children enjoy the most, we tend to visit with more regularity. During the summer, we spend a lot of time at splash pads and playing in the creek at Flowing Well Park in Carmel. Carter is in his element anywhere he can splash in water!”

Carter is very receptive to trying new things. “Our biggest challenge has been recalibrating the way that we approach those everyday things that others take for granted,” Vince said. “Carter likes things scheduled, so we have to make sure that we are always thinking two or three steps ahead. It is important that we walk him through exactly what we are going to do. He needs to know what will happen and what our expectations are when we do something new.”

“We do make more intentional choices [than most families] about where we go to eat or where in Carter’s schedule a certain activity fits,” Taylor added. “When we have playdates with others, we often have to think about what the location will

look like. We work to give him as much independence as possible, but we’ll try to meet at a playground that is fenced in. That gives him the opportunity to be able to play freely without the worry of him possibly wandering off.”

Although both Taylor and Vince like to cook at home — it’s both a stress reliever and a form of relaxation — they aren’t hesitant about taking the boys to restaurants. Carter has no dietary restrictions, which simplifies matters. “It is important to us that we teach the boys proper table manners but also how to interact with others in a social setting,” Taylor said. “We like to eat all kinds of foods and try different things. Carter loves chips/salsa and pizza and really enjoys eating fresh seafood when we are at the beach. We try to expose both of our children to new cuisines and experiences as often as possible. We love to visit Riviera Maya, Puccini’s and The Well Coffeehouse.”

A lot of the Scott family traditions revolve around the holidays. They get hot chocolate and drive around looking at Christmas lights and have dinner with their extended family at Capri every Christmas Eve. “Carter has really been the catalyst for bringing a lot of that childlike joy back to our holiday and birthday celebrations, Taylor said. “He LOVES celebrating pretty much anything and is always making sure that everyone is just as excited as he is. He loves Christmas and Santa so much that he will watch Christmas Chronicles all year long. There are very few movies he will sit through, but he’ll watch that one on repeat.”

Traveling with the boys became easier once the Scotts implemented a few stress-reducing practices. “We have learned that it is best for us to vacation with our family and friends,” Vince said. “To make things easier for Carter, we always travel with his safety bed, and we know to make time for him to rest during busy days in a different environment. We also have learned that it is important to stay in a house with lots of extra living space instead of a hotel. Carter wakes up very early, and having our space allows us to keep our morning routine similar to our routine at home.”

“Some of our happiest memories are seeing our son enjoying himself on vacation,” Taylor added. “We traditionally spend a week every June in the Outer Banks of North Carolina with extended family, and we also like St. Joseph, MI. Carter is always so excited to spend time with his relatives, and it has been fun to watch him grow over the years.”

The Scotts encourage other families with special needs kids to stay calm and really try to teach flexibility. “We talk through our plan before leaving the house, but things don’t always go as planned,” said Vince. “It has been so important that we teach Carter strategies to help him pivot and be flexible.”

“Don’t be afraid to ask for what you need from others in the community,” Taylor added. “There are so many people and businesses that have been more than willing to help us with creating unforgettable experiences for Carter. Having a special-needs child changed the way we both looked at our

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community. A lot of our focus changed from ‘What is there for us to do?’ to ‘What is there that Carter will be able to participate in?’ We are very proud of the inclusive environment that the city of Fishers has created and love taking Carter out in the community to experience new things.”

The Scotts give back to the community by supporting the Angelman Foundation. “We attend their annual walk here in Fishers and donate to them each year,” Vince said. “They have been a very valuable resource for us, particularly as we began our journey. They helped us find the medical resources we would need and assisted us in navigating the beginning of Carter’s therapies. They also helped us get a safety bed for him.”

Both Vince and Taylor are open about their ongoing need to get away for a day or two to recharge or even have a date night, something they share with just about all parents of special-needs kids. “The stress is real!” Taylor said. For Carter, she hopes that he will always have teachers, friends and family that believe in his abilities and are committed to seeing him grow. “Finding those that are truly committed to helping him become his best self are our greatest resources. We have also learned that it is so important to focus on the strengths that your child has. Every child has their gifts, and it is vital that we do all we can to show these to the world.”

SBS Director Spotlight

Katie Wilds, M.Ed. SBS Regional Director, and Behavior Consultant started her career in elementary education after graduating with a master’s in special education from Marian University. She taught K-5th grade in Center Grove and Perry Township, before settling down in Indianapolis Public Schools.

“I had offers from other school districts, but I chose IPS because I knew I would have the most impact there. I need to be able to go to sleep at night knowing I made a difference for someone. If I don’t feel that, then I know I’m not where I am supposed to be. I was a good educator, but I was a great behavioralist. I loved being able to work with the special education population and show them they have the power to change their mind, mood, and turn a bad day around.

After having her first child, she was looking for a fulfilling and flexible position. She wanted that elusive thing we all want, a work/life balance. “I still wanted a career I loved and to make a difference in people’s lives, but I also needed the flexibility to be present for my girls. It’s rare for a working mother to continue a fulfilling career and be able to have the flexibility for her children and self-care, but I am able to have that balance working for SBS. Working as a Behavior Consultant with my amazing individuals has given me so much purpose and happiness in my life. My goal is to empower them to understand that they can be as independent as they choose to be. In pursuit of this, they can recognize they have control over their lives. I feel so fortunate to live in a community with programs like the Medicaid Waiver, and to be able to work for a company like Supportive Behavior Services.”-KW

Indiana Behavior Association

We are so excited to bring the news of the opening of the Indiana Behavior Association. Creating IBA began in the fall of 2022 in response to the need to improve best practices among Behavior Consultants and to hold agencies that provide Behavior Support Services accountable. We have a lot of work to do and a lot of work to undo. Below are the exciting and unique ways that set this professional association apart.

"The Executive Board positions of President, Vice-Present, Treasurer, Secretary, and Editor shall not be held by an individual that holds an Executive level position at their agency, such as Director, Executive Director, or owner." And " Agencies that utilize restrictive covenants such as Non-Competition clauses that directly or indirectly restrict the genuine free choice of a person with a disability to select the clinician they want to work with, are ineligible for agency level membership at IBA. Agencies may become eligible if they, in writing, formally remove the presence and use of such restrictive measures."

SBSMain2020@gmail.com

SupportiveBehaviorServices.com

IBA will also be offering monthly CEUs virtually for all members of the association on a wide range of pertinent and dynamic topics. Additionally, IBA is establishing a legal aid fund to help Behavior Consultants across Indiana that have been subjected to restrictive covenants and any illegal employment practices. It has been a common occurrence in the disability industry for BCs to experience false solicitation complaints as a retaliatory tactic and the common tactic is to send threatening cease & desist letters to threaten legal action towards a Behavior Consultant and the other disability industry agency. IBA has retained two predominant Indiana employment attorneys to assist, guide, and represent those BCs at little to no cost to the BC. It is the above actions that has caused our industry to lose a lot of great Behavior Consultants to other social work industries over the years. *Our long-term goal is to open the legal aid fund to Music and Recreational Therapists across Indiana, as we know they have been experiencing the exact same bullying.

IndianaBehaviorAssociation.com

Photos by Chloe Biszantz Photography

MEET THE HEAD FAMILY

BY LISA DEFILIPPO; PHOTOS BY 21VINES PHOTOGRAPHY

Adam, Lindsey, Cadence, Cael and Lincoln

Meet the heads of the Head Family — Adam and Lindsay, their adorable kids Cadence, 17, Cael, 14, Lincoln, 8, and their therapy dog, English labrador retriever Atlas, 5.

Adam is a veteran of the United States Navy and a registered nurse at the Roudebush VA Medical Center in Indianapolis. Lindsay is co-owner of Therapy Redefined, located in Carmel, IN, which the family now calls home.

“We both grew up in Carmel but have lived in various parts of the country due to Adam’s Navy career,” explained Lindsay. “Cadence was born in Florida, Cael was born in Wisconsin, and after Adam’s time in the Navy was up, we wanted to return home to Indiana, so Lincoln was born here. We often joke with new people we meet that every time we moved to a new state, we had a baby!”

The move back home to family and friends in 2009 proved to be exactly what the young family would need. Adam and Lindsay learned at the 20-week ultrasound that their little Hoosier, Lincoln, had a heart condition. It was recommended that the couple get genetic testing since many significant heart defects are linked to genetic syndromes.

“Adam and I were so overwhelmed with the heart condition we could not even think about genetic testing. It would not have changed our plan anyway,” said Lindsay. “I kept saying it does not matter because we are staying the course.”

“During his first year, he had massive gastrointestinal (GI) issues that were finally corrected at age 14 months,” she continued. “Finally, around this time, the dust was starting to settle, and we had the bandwidth to think about genetics, so we agreed to the FISH test [a blood test that measures genetic changes in cells].”

While visiting her best friend in Wisconsin, Lindsay remembers getting the call from Riley Genetics, expecting to hear an automated appointment reminder, but instead receiving the news that they had

found a diagnosis — a list of unknown medical terms Lindsay scrawled shakily on a nearby napkin.

“She said it was called DiGeorge Syndrome, also known as Velo Cardio Facial Syndrome, or 22q,” Lindsay said. “We were given zero information on 22q, no resources, no support groups, nothing; and to top it off, there are very few doctors who know how to really care for these patients. Thankfully, I’m not one who takes ‘no’ for an answer.”

Armed with her napkin and a syndrome that went by three different names, Lindsay set out to find out as much as she could about 22q.

“22q is a syndrome, which means there is a spectrum,” Lindsay explained. “22q can be the cause of nearly 200 mild to serious health and developmental issues in children and is believed to be the second most common genetic disorder behind Down syndrome — yet most have never heard of it! Because each person diagnosed with 22q presents a unique set of the possible 180+ symptoms, it is difficult for even the best doctors to recognize.”

Lincoln’s first several years of life were very medically complex, Lindsay said, and he was often in the hospital for testing or surgeries. Later diagnosed with VPI, or velopharyngeal insufficiency, Lincoln has nasal reflux, which caused repeat sinus/eye/ear infections and aspirations during his first 24 months of life. He also had a tethered cord release just before his second birthday, which is a procedure to separate the spinal cord from abnormal tissue that limits its movement within the spinal column.

“Medical trauma not only affects the patient but each member of the family as well. Isolation due to the rarity and complexity of the syndrome has affected our entire family,” said Lindsay. “Trying to balance keeping him healthy while raising two older children who needed us at the same time, but in different ways, proved extremely challenging. Having to look at your 7- and 10-year-old children and try

to explain why we can’t have friends over, or why we can’t go places or just go out and do ‘normal’ kid things because of the health risks it would impose on Lincoln, was exhausting.”

The lack of information was also exhausting, but thankfully Lindsay was able to track down two amazing support groups: About Special Kids (ASK), which helped the family answer insurance and waiver information, and one particular group of moms who soon became her tribe — the 22q Family Foundation. Lindsay has been able to connect with 36 different moms who also have children of various ages and two in particular who have children close to Lincoln’s age, from across the country and internationally, to learn what has worked or hasn’t worked for other families on this journey. Lindsay now works closely with the 22q Family Foundation to find other local 22q families and help inform them about what resources they have available to them.

“Isolation is the silent killer of families with special needs, and most of the world has no idea,” Is by Kate Swenson, author of Forever Boy, and the popular blog Finding Cooper’s Voice “This situation is extremely isolating, and when you are in the trenches, you can feel like you’re on an island alone. My advice to anyone who finds themselves in a similar situation is to always ask questions, never stop advocating, go with your gut and look

for parent support groups — even if you can [only] find a group for families of children with medically complex conditions or a local special needs group, you need to find your people and build your support group.”

Thankfully Lincoln’s medical issues are slowing as he gets older, so the Heads are on to a new phase of their 22q journey. “Lincoln has to work extremely hard for everything he does,” said Lindsay. “For example, keeping his focus on the task at hand is tough; he has low tone and fine and large motor difficulties that make everything — handwriting, sitting on the floor, motor planning — much harder, and that can be exhausting.”

Lincoln was a very late talker (four years nonverbal), which is very common with 22q. “I will never forget the first time he was able to tell us, ‘I love you,’ or tell us his friends’ names at school without the teacher having to tell us first,” said Lindsay. “Now, he literally never stops talking!”

“The fact is that Lincoln has faced more life challenges in his short eight years than most people face in their adult life, and yet every day he continues to find joy and a way to make other people laugh,” shared Lindsay. “He often leaves us in awe. He is teaching us how to work hard, never give up and keep a positive attitude. And because of the challenges we have had to face as a family, our older two

children are some of the most accepting, compassionate and caring teenagers you will find,” she gushed. “Everyone who is involved with Lincoln is a better person because of him. He is pure joy, loves to give hugs, loves to tell jokes. The world is a better place because of the uniqueness he brings.”

Lindsay says their focus is now on school, therapies and making sure Lincoln has what he needs to succeed, which comes with a new set of challenges, “but our support system is much bigger than it was when he was born!” Lindsay and her family now find themselves in

a place where they feel supported and heard — a mission statement

Lindsay now uses in Therapy Redefined, a pediatric therapy center she co-founded after discovering there weren’t enough resources for Lincoln.

“There is no better satisfaction than seeing a child come in with areas of weakness and leave crushing their goals, with great selfesteem, and knowing they have the tools to conquer any obstacle that they will encounter,” said Lindsay. “Our clients are not just patients, they are family, and we are so lucky to have the best and most genuine families to serve.”

GET TO KNOW THE HEAD FAMILY: Cadence is a cheerleader for Westfield High School and wants to become a veterinarian.

Cael is a multi-sport athlete at University High School and loves to fish.

Lincoln is a first grader at Towne Meadow Elementary, where he loves playing with friends, trying new sports and meeting new people. Lincoln absolutely loves cars both Hot Wheels and the real thing. He can look at a car symbol and tell you who the maker is. Lincoln would love to be a racecar driver when he is older.

“Our family loves the ocean; this is a place our entire family can rest and recharge. We have adapted what we do when we travel to meet Lincoln’s needs while still entertaining his siblings and spending time as a family. We worked a lot on swimming this summer in preparation for a big beach vacation that we will go on over winter break. We are hoping Lincoln will be able to snorkel with the family, which would be huge! Even if his ‘snorkeling’ will be just watching the fish from above the water while swimming.

Lincoln is always up for an adventure. If he is big enough to do what his siblings are doing, he does NOT want to be left out. He likes to pretend he is just as old as they are especially when it comes to things like playing laser tag, arcade games, bowling and parties.

Adam is a Chicago Bears fan since he grew up in a suburb of Chicago. Lindsay loves to watch any sport that the kids are involved in.

Lindsay is part of a newly formed parent group for any parent who has a child with an IEP in Carmel schools. Lindsay’s business, Therapy Redefined, plays a very active role in the community, providing services and advocating for their clients.

Cincinnati Children’s Hospital has been and still is a big part of Lincoln’s care.

So much of your life is spent listening to a variety of professionals tell you what your child can’t do IEP meetings, doctors, therapists, etc. Don’t forget to take time and focus on the positives and what your child can do and does well.

Find your people and love them well.

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 • Speech therapy • Home health aide services • Attendant care services