December 2022 Special Needs Living Akron/Canton

DECEMBER 2022

HAPPY HOLIDAYS FROM NICK DOYLE PHOTO BY MICHELLE HERDLICK

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December 2022

Akron & Canton Special Needs Living

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December 2022

ISSUE PREVIEW

Pictures Say Thousands of Words … about Savannah Stagles

Youth Feature: Bella Rose Carter

Nonprofit Spotlight: Summit DD

(6) Important Community Connections (14) Paying it Forward (21) Parent Perspective: Summerly Rowlands (22) Meet Nick Doyle, aka The Big Dog (28) International Community Resource: Wheels of Hope (30) Youth Feature: Bella Rose Carter (33) Community Success Story: Marvin’s Graduation Day (34) Family Feature: Ryan Houck and Family (39) Educational Perspective: ABCs of IEPs (40) Nonprofit Spotlight: Summit DD (44) Inspirational Perspective: Kyle Nottingham (47) Autism Perspective: Dr. Kristine Turko (48) Pictures Say Thousands of Words … about Savannah Stagles (51) Community Impact Q&A: Karen Layton (52) Sponsor Spotlight: REM Ohio (54) Final Take

Advertising Inquiries Rick Miller (330) 283-8462 rick.miller@n2co.com

Community Success Story: Marvin’s Graduation Day

Content Nominations Mike Sturdivant (330) 704-1227 mike.sturdivant@n2co.com

Facebook (@snl.cak) Instagram (special_needs_cak)

Family Feature: Ryan Houck and Family

Meet Nick Doyle, aka The Big Dog

Inspirational Perspective: Kyle Nottingham

Scan the QR Code to Like, Subscribe or Nominate:

Sponsor Spotlight: REM Ohio

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COMMUNITY RESOURCES

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!

AKRON BLIND CENTER

Phone: 330-253-2555 Website: www.akronblindcenter.org The Akron Blind Center Inc. is a membership-based nonprofit organization incorporated in 1948 to serve the blind and low-vision communities. They also provide resources, programs, services and classes for Summit and surrounding counties.

AKRON CHILDREN’S HOSPITAL

Phone: 330-543-1000 Website: www.akronchildrens.org Akron Children’s Hospital has been caring for children since 1890, and its pediatric specialties are ranked among the nation’s best by U.S. News & World Report. With two hospital campuses, four health centers, and 50+ primary and specialty care locations throughout Ohio, they’re making it easier for today’s busy families to find the highquality care they need.

ARC OF OHIO

Phone: 234-571-5689 Website: www.thearcofohio.org The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.

AUTISM SOCIETY OF GREATER AKRON

Phone: 330-940-1441 Website: www.autismakron.org The Autism Society is the nation’s oldest and largest grassroots autism organization committed to improving the lives of those affected by autism. The Greater Akron affiliate was founded in 1987 by parent volunteers of children with autism.

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December 2022

BUREAU OF SERVICES FOR THE VISUALLY IMPAIRED (BSVI)

Website: www.ood.ohio.gov/individuals-withdisabilities/services/services-for-the-visually-impaired MEDINA, PORTAGE, AND SUMMIT COUNTIES

Phone: 330-643-3080

CARROLL AND STARK COUNTIES

Phone: 330-438-0500 BSVI assists eligible people, beginning at age 14, with low vision and blindness by providing direct, personalized services to assist them in finding and retaining meaningful work and personal independence. Basic services include personal and work adjustment training, vocational training, mental and physical restoration, and placement assistance.

HELP ME GROW

Phone: 330-492-8136 Website: https://odh.ohio.gov/know-our-programs/ help-me-grow/help-me-grow Help Me Grow is Ohio’s evidence-based parent support program that encourages early prenatal and well-baby care, as well as parenting education to promote the comprehensive health and development of children. Help Me Grow System includes Central Intake, Help Me Grow Home Visiting, and Help Me Grow Early Intervention.

OHIO’S PARENT MENTOR PROJECT

Phone: 844-382-5452 Website: www.parentmentor.osu.edu It is the mission of the Ohio Parent Mentors to provide the necessary support and resources to families of children with disabilities and the professionals that serve them by connecting families, schools, and the community to the benefit of students with disabilities.

CALL 211

Phone: 211 Website: www.211.org Serving four counties and covering 1.5 million people in Ohio, the United Way 2-1-1 Help Center provides free and confidential 24-hour access to a compassionate professional who will review your options for help, develop a plan and act as your advocate if you are faced with barriers to service. Simply dial 2-1-1 or chat with us for assistance. Se habla Espanol.

COMPASSION DELIVERED

Phone: 330-575-0996 Website: www.compassiondelivered.org Compassion Delivered provides medically tailored nutritional meals to people coping with chronic, life-threatening illnesses and diseases.

DOWN SYNDROME ASSOCIATION OF NORTHEAST OHIO

Phone: 216-447-8763 Website: www.dsaneo.org The Down Syndrome Association of Northeast Ohio is a nonprofit that provides support, education, advocacy, and resources for individuals with Down syndrome, their families and the community.

GREENLEAF FAMILY CENTER (DEAF AND HARD OF HEARING SERVICES)

Phone: 330-376-9494 Website: www.greenleafctr.org Greenleaf is a nonprofit organization that strengthens families in our community through counseling, education and support. By offering a variety of programs and services, we are here to help families with the many challenges of daily living and personal crises.

OHIO COALITION FOR THE EDUCATION OF CHILDREN WITH DISABILITIES

Phone: 844-382-5452 Website: www.ocecd.org The OCECD is a statewide nonprofit organization that serves families of infants, toddlers, children, and youth with disabilities in Ohio, educators, and agencies who provide services to them.

OHIO DEPARTMENT OF MEDICAID

Phone: 800-324-8680 Website: www.medicaid.ohio.gov The ODM provides health care coverage to more than three million Ohioans through a network of more than 165,000 providers. Learn more about Ohio’s largest state agency and the ways in which they continue to improve wellness and health outcomes for the individuals and families served at our website.

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

OHIO DEPT OF JOB AND FAMILY SERVICES

Phone: 800-720-9616 Website: www.jfs.ohio.gov The Ohio Department of Job and Family Services (ODJFS) is responsible for managing many vital programs that directly affect the lives of Ohioans.

OHIO DEVELOPMENTAL DISABILITIES PLANNING COUNCIL

Website: www.ddc.ohio.gov Phone: 800-766-7426 The Ohio Developmental Disabilities Council is a planning and advocacy body committed to community inclusion for people with developmental disabilities. It is the mission of the ODDC to create change that improves independence, productivity, and inclusion for people with developmental disabilities and their families in community life.

OPPORTUNITIES FOR OHIOANS WITH DISABILITIES

Phone: 800-282-4536 Website: www.ood.ohio.gov This state agency works to empower Ohioans with disabilities through employment, disability determinations, and independence. Amoung the many services provided, OOD is responsible for establishing and maintaining partnerships with employers.

PEOPLE FIRST IN OHIO

Website: www.peoplefirstohio.org People First of Ohio is a statewide organization that works with state legislators and builds relationships with other advocacy groups and state agencies. These relationships promote better interaction among people who make decisions in the communities and the state.

PHILOMATHEON SOCIETY OF THE BLIND

Phone: 330-453-9157 Website: www.philomatheon.com This organization is a gathering of blind and visually impaired people, along with sighted family and friends, with a mission and goal to help the blind and visually impaired in the community to help themselves to remain or to become able to live independently and an active member of their community.

PORTAGE COUNTY BOARD OF DEVELOPMENTAL DISABILITIES

Phone: (330) 297-6209 Website: www.portagedd.org The Portage County Board of Developmental Disabilities exists to connect individuals and families with the services they need for health, safety, education and a high quality of life.

RED TREEHOUSE — RONALD MCDONALD FAMILY

Website: www.redtreehouse.org Supporting the well-being of families and children with challenges, disabilities, and health care needs. Finding tools, organizations, and events in the community to meet the needs of families.

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December 2022

SHARING SOLUTIONS

Phone: 330-546-2001 Website: www.sharingsolutions.info A community of parents/guardians of individuals from transition to adult age with Intellectual and Developmental Disabilities, professionals who serve the IDD community, caregivers, and policymakers. The focus is to provide information, support, and assistance to all. Everyone is encouraged to play an active role in sharing their resources, knowledge, and experiences.

SOCIAL SECURITY ADMINISTRATION — AKRON

Phone: 800-772-1213 Website: www.secure.ssa.gov

SOCIAL SECURITY ADMINISTRATION — CANTON

Phone: 877-255-1509 Website: www.secure.ssa.gov The Social Security Administration assigns Social Security numbers and administers the Social Security retirement, survivors, and disability insurance programs. They also administer the Supplemental Security Income program for the aged, blind and disabled.

STARK COUNTY BOARD OF DD

Phone: 330-477-5200 Website: www.starkdd.org Stark DD connects individuals and families with the services persons with developmental disabilities need for health, safety, education and quality of life.

SUMMIT COUNTY DEVELOPMENTAL DISABILITIES BOARD

Phone: 330-634-8000 Website: www.summitdd.org Summit DD offers early intervention programs for infants and toddlers with developmental delays, as well as transition services for students with developmental disabilities to vocational, habilitation and retirement programs for adults.

TRIAD DEAF SERVICES

Phone: 330-768-7272 Website: www.triadds.org TRIAD Deaf Services Inc is an agency providing services to the deaf community in Stark, Carroll, and Tuscarawas Counties. They provide support services, interpreting, leadership, deaf advocacy and education.

From Our Jason's Place Family To Yours...

MERRY CHRISTMAS And a Blessed New Year

Akron & Canton Special Needs Living

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CONNECTING PEOPLE + COMMUNITY

Get To Know

WE HAVE TO OFFER 10

December 2022

SENIOR SERVICES

GentleBrook provides residential options for seniors looking to age in place.

The HomeStead:

Our 49 bed assisted living and memory care facility

The Villas:

COMMUNITY DEVELOPMENTAL DISABILITIES SERVICES GentleBrook serves the GentleBrook fosters independence for individuals with intellectual

and/or developmental disabilities

by offering programs and services through our adult day programs

and residential support services, including residential waiver

Our independent living 55+ condominium community

services, and intermediate care facilities (ICF) in Hartville and

West Lafayette. In July of 2022,

GentleBrook will take over as the

provider of adult day services for the Holmes County Board of Developmental Disabilities.

community through two businesses in Hartville.

GentleBrook Greenhouse + Farm:

GentleBrook Greenhouse + Farm has a wide selection of beautiful bedding plants, hanging baskets, house plants & succulents. Open to the public spring through fall.

The SportsPlex: An

indoor sports recreation center with a full basketball court and a 7,500 sq. ft. turfed multi-sport training facility for individual and team use.

GentleBrook is a not-for-profit social purpose enterprise that believes in connecting people + community through services and businesses.

We believe all human life is a sacred gift and most fulfilled in community with others.

GentleBrook Corporate Office

880 Sunnyside SW, Hartville, Ohio 44632 330-877-7700 | gentlebrook.org |

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This section is here to give our readers easier access when searching for a trusted community 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 SERVICES Applied Behavioral Connections Kristen Maple (330) 309-3133 info@appliedbehavioralconnections.com ACCESSIBILITY & SAFETY MODIFICATIONS JTEK Solutions Group, LLC Jared Chevraux (330) 323-0943 www.jtekgroup.com ACT PREP & TUTORING Bright Minds Learning Academy Sheila Lahoti 5368 Fulton Dr. NW Canton, OH 44646 (330) 966-7226 www.brightmindsla.us ADULT DAY SUPPORT Premier Approach, LLC Christian Manns (330) 312-6909 www.facebook.com/PremierApproachLLC ANIMAL FENCE/TRAINING DogWatch of Northeast Ohio Donnie Myers (330) 915-6036 www.dogwatchneo.com ART STUDIO BZTAT Studios, LLC (330) 371-3150 www.bztatstudios.com

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The Chapel Green Amy Troyer (330) 315-5501 www.facebook.com/greenspecialneeds

EMPLOYMENT/STAFFING Express Employment Professionals (330) 239-8709 www.expresspros.com/cantonoh

COFFEE SHOP Whole Latte Love Cafe (234) 360-2233 www.wholelattelovecafe.org

ENTERTAINMENT AND FOOD Stark Flavor (330) 704-1227 www.StarkFlavor.com

COUNTY DISABILITIES BOARD Stark Board of Developmental Disabilities Lisa Parramore (330) 479-3934 www.starkdd.org

EQUESTRIAN CENTER Pegasus Farm Shelley Sprang (330) 935-2300 www.pegasusfarm.org

DAYCARE/PRESCHOOL Once Upon A Daycare Rosie Ebner (330) 990-1466 www.onceuponadaycare.org

FINANCIAL PLANNING Skylight Financial Group Kathryn Bryan (216) 592-7319 www.skylightfinancialgroup.com

Once Upon A Daycare (330) 990-1466

HARDSCAPES/ LANDSCAPES Campbell Landscaping (330) 933-9091 www.campbelllandscaping.com

DEVELOPMENTAL DISABILITY CARE Easterseals Northern Ohio Conor McGarvey (234) 417-0250 www.easterseals.com/noh The Workshops, Inc Rachel Doty (330) 497-3399 www.choosetwi.com

BOOKKEEPING/ACCOUNTING Paragon Accounting and Business Services, Inc. (330) 575-2291 www.paragonabs.com

DISABILITY RESOURCES REM Ohio, Inc Jo Spargo (330) 644-9730 www.rem-oh.com

CHIROPRACTIC/WELLNESS Vogelgesang Family Wellness & Chiropractic Center (330) 818-1212 www.vogelgesangfamilychiropracticinc.com

EDUCATION SERVICES Jason’s Place Melissa Hadnett (234) 714-9815 Facebook

CHURCH First Christian Church (330) 456-2600 www.firstchristian.com

Red Line Advocacy (234) 678-9622 www.redlineadvocacy.com

December 2022

HOME BUILDER Charis Homes Glenna Wilson (330) 833-4527 www.charishomes.com HOME CARE SERVICES SafeInHome - Ohio (740) 207-5800 www.safeinhome.com HOUSE OF WORSHIP Harvestime Temple (330) 877-6544 www.harvestimeonline.org INDEPENDENT PRIVATE SCHOOL Wings of Change Therapy Inc Erica Myers (234) 334-0044 www.wingsofchangetherapyinc.com INSURANCE AGENT American Family - Richard Corns Haley Seifert (234) 714-2300

INTERIOR DESIGN A & J Arrangements and Design LLC (440) 668-6388 JOB PLACEMENT SERVICES Independent Employment Services Malcolm Porter (330) 388-5778 www.independentemploy.com MENTAL HEALTH SERVICES Carve Your Own Path, Inc. (330) 426-7885 www.carvemypath.org NON-PROFIT GentleBrook Francie Kell (330) 877-7700 www.gentlebrook.org

The Down Syndrome Association of Northeast Ohio (216) 447-8763 www.dsaneo.org OUTDOOR LIVING Kitzmiller Design Solutions (330) 614-4798 www.kitzmillerdesignsolutions.com PERSONAL LEGACY PORTFOLIO DEVELOPMENT The Preferred Legacy Trust Company Tiffany Rockstroh (330) 209-9229 www.preferredlegacy.com PIZZA DINE-IN & DELIVERY Bosco’s Pizza Kitchen (234) 258-4800 www.Boscospizzakitchen.com

NON-PROFIT ORGANIZATION GiGi’s Playhouse Canton Megan Vance (330) 493-9114 www.gigisplayhouse.org/canton

POOL WATER DELIVERY Strouble Water Hauling (330) 877-6795 www.stroubletrucking.com PRIVATE SCHOOL The Golden Key Center for Exceptional Children Gina Bannevich (330) 493-4400 www.goldenkeyschool.com

n2co.com Delivering Neighborhood Connections © 2022 The N2 Company, Inc.

REALTOR® eXp Realty : The Amy Wengerd Group Amy Wengerd (330) 681-6090 www.amysguarantee.com RESTORATION & CLEANING Brahlers Cleaning & Restoration Stacy Ignacio (330) 834-0008 www.brahlerscrr.com SUPPORT GROUP Sharing Solutions www.sharingsolutions.info THEATRE Canton Palace Theatre Laura Strader (330) 454-8172 www.cantonpalacetheatre.org TRANSPORTATION PROVIDER CLEARVIEW DEVELOPMENTAL SERVICES Dean Miller (330) 224-4403 Facebook

DISCLAIMER: This publication is owned by The N2 Company and is not affiliated with or sponsored by any club, developer, or homeowners association. Articles and advertisements in this publication and opinions expressed therein do not necessarily reflect the views of N2 but remain solely those of the author(s) or advertiser(s). The paid advertisements contained within this magazine are not endorsed or recommended by N2.

Call TODAY to schedule a visit!

330.990.1466

­

www.onceuponadaycare.org

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Paying it Forward Local business owners supporting Nonprofit Organizations that impact our Special Needs Community The businesses shown on this page are those committing financial support to local community resources that couldn’t afford to advertise in Special Needs Living magazine on their own.

Feel free to repay the generosity these local business owners are showing by giving them a Like and Follow on Social Media, a Review on Google or Facebook or if you have a need that can be met by one of these businesses, give them a call. I’m sure they will be thrilled to serve you!

ANDY CAMPBELL www.campbelllandAscaping.com andy@campbelllandscaping.com

GLENNA WILSON www.charishomes.com gwilson@charishomes.com

BETH STROUBLE www.stroubletrucking.com Stroubletrucking@yahoo.com

DEAN MILLER www.facebook.com/clearviewdsi clearviewdsi@gmail.com 14

December 2022

BRANDI PINE www.expresspros.com/cantonoh brandi.pine@expresspros.com

MONICA RANKIN www.paragonabs.com monica@paragonabs.com

MIKE STURDIVANT www.StarkFlavor.com info@starkflavor.com

Listen To Your Body, Strengthen Your Mind WE SUPPORT HEALING THROUGH MENTAL HEALTH COUNSELING, YOGA, ART THERAPY, EDUCATIONAL WORKSHOPS, AND MORE!

CALL TODAY! STOP the STIGMA! 330-426-7885

Carve Your Own Path, Inc. | 840 Rothrock Rd, Suite 203, Copley, OH 44321 | carvemypath.org Special thank you to Campbell Landscaping for supporting Carve Your Own Path, Inc. and sponsoring this ad.

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The Special Needs Living Magazine Team

Rick Miller Owner

Malinda Oakes Managing Editor Special Events Coordinator

Mike Sturdivant Content Director

Dave Keller Ad Strategist / Client Services

Shelley Harkness Scheduling Assistant

Sarah Smith Writer

Andrea Hurr Writer

Deborah Riley Writer

Melissa Klatt Writer

Joe Albert Photographer

Julian Curet Photographer

Michelle Herdlick Photographer

Vogelgesang Family Chiropractic Inc. Mon: 9:00 AM – 5:30 PM | Tue: 9:00 AM – 12:00 PM | Wed: 9:00 AM – 5:30 PM Thu: Closed | Fri: 9:00 AM – 4:00 PM | Sat: Closed | Sun: Closed

For Your Health And Wellness Call Today! (330) 818-1212 vogelgesang-family-chiropractic-inc.business.site 7266 Portage Street | Suite C | Massillon 16

December 2022

SPECIAL NEEDS LIVING MAGAZINE December issue contributors

REBECCA MCCLARY Parent Advocate Summary Info: As a special needs mom, Rebecca seeks opportunities to connect with other parents on similar journeys. Her journey started nine years ago, when her daughter was born prematurely. She is a parent advocate, specializing in guiding parents through the challenges of IEPs, 504s, and school accommodations for children with disabilities. Rebecca jokes that she uses her Communication Degree, from Kent State University, as a navigation tool through thousands of medical appointments, therapies, and school meetings.

SUMMERLY ROWLANDS www.my22qt.com Summary Info: Summerly Rowlands is a mom, licensed school counselor, and business owner.

While raising a family of three in Jackson Township. She works full time as a high school counselor and runs a website on the side to raise awareness for her daughter’s rare genetic condition, 22q11.2 deletion syndrome. If you find her on social media, you will see that she might be obsessed with snapping photos every single day of her kid’s cute faces and everything they do!

DR. KRISTINE TURKO, BCBA, COBA University of Mount Union Summary Info: Dr. Turko is a professor of psychology and the director/founder of the Spectrum Education Center at the University of Mount Union. Kristine is a Board Certified Behavior Analyst and is licensed to practice in the state of Ohio. She joined the faculty at Mount Union in 2006, after earning MS and Ph.D. degrees in Psychology at Lehigh University, and a BS degree in Psychology at Drexel University.

Kristine’s work at the Spectrum Education Center includes autism intervention, undergraduate training in the field of autism, professional development, and supporting area school districts.

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WE KNOW HOW ESSENTIAL YOUR PERSONAL MOBILITY DEVICES ARE TO YOUR LIFE

That's why we insure them!

CHOOSE THE COVERAGE THAT MEETS YOUR NEEDS: Personal Mobility Device Coverage Covers you anywhere on or off the road for: • Bodily Injury • Property Damage • Collision • Medical Payments • Uninsured Motorist • Underinsured Motorist • Comprehensive

Equipment Breakdown Coverage Available for home, condo, or renters and covers mobility devices and motorized chair lifts from mechanical breakdown, electrical breakdown, or power surge.

office: 234-714-2300 cell: 330-413-6986 rcorns@amfam.com

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December 2022

Call Richard Corns TODAY for more information!

COFFEE WITH A PURPOSE will feature a fun-filled evening with auctions, raffles and so much more!

Whole Latte Love Café is raising funds to expand our services and continue providing competitive employment support for people with disabilities. This expansion effort, called WHOLE COMMUNITY, will offer a public rentable conference room, complete with a coffee cart option, as well as an extension of our retail shop and a training room equipped to address individual employment goals.

We would love to have you and your business or company be a part of this new opportunity by partnering to purchase an advertising sponsorship Please see us at the front counter or contact 234-360-2233 or info@wholelattelovecafe.org for more information.

We would be happy to answer any questions you may have.

Stop by, you'll be glad you did!

M-F 8:30am – 4:00pm | Sat. 8:30am – 2:30pm

1308 South Main St. • North Canton, OH 44720

Special thanks to Charis Homes and Stark Flavor for supporting Whole Latte Love Cafe and for sponsoring this ad!

cafe@wholelattelovecafe.org 234-360-CAFE (2233)

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December 2022

PARENT PERSPECTIVE: SUMMERLY ROWL ANDS

Coping With A Child’s Diagnosis The Five Stages Of Grief

BY SUMMERLY ROWLANDS, OWNER AND CREATOR OF WWW.MY22QT.COM

about 17 months in, and not only am I a better person for going through the emotions, but I’m a better person because of my daughter.

Feel the feels, let the emotions in and then let the emotions out. In my eyes and our situation, acceptance parallels hope, and “once you choose hope, anything is possible.

—CHRISTOPHER REEVES

No matter what a person is mourning, they typically cycle through the five stages of grief. For me, I have an internal struggle with saying I’m in mourning, or was mourning, because how could I think or say those words while I have my perfect blessing of a daughter right next to me? However, if we’re being honest, I did mourn. I mourned the thought of what having a daughter would be like. And although that doesn’t get easier to say out loud, I’ve learned it’s OK to feel that way.

Plans went from a special life of her and I to a special-needs life of her and I and the doctors. I also mourned for my daughter. The fact that she won’t live a typical life or a life that society deems “typical.” But here we are,

1. Denial. When we first got the positive results for our daughter’s genetic diagnosis, I was confused, numb and unbelieving. The bloodwork must be wrong because this doesn’t make sense, and this wouldn’t happen to us, this couldn’t happen to us. We were told everything was fine when she was born, so clearly, there’s a mistake. I refuse to believe what I am being told.

2. Anger. Denial was a fairly quick phase for me to get through because after the initial shock wore off, there wasn’t much I could deny at all. Anger on the other hand — that stuck. Our daughter was admitted to the hospital for 18 days after she was born while trying to figure out what was going on, and every single day I was angry. Yelling, crying, swearing, staring, angry.

This is completely unfair. People are out here living their happy lives, having healthy kids, and this is what we get?! Why us? Why our daughter? Why would God do this? HOW COULD YOU LET US BRING AN INNOCENT CHILD INTO THIS WORLD JUST TO GIVE HER A HARD LIFE?!

3. Bargaining. Once the anger settled (and, like I said, that took some time), I found myself bargaining, praying, pleading.

I would sit alone and just cry, calling out to God — please, PLEASE let my daughter live a normal life. I’ll do this, and I won’t do that if you could just please make things better and make sure that she lives a long, healthy, happy, safe life. Please. Please…

4. Depression. I still talk to God and pray for my daughter, but in all of my pleading at the beginning, it felt like He was never hearing or answering me … and so the depression set in. Day in and day out of not sleeping, being covered in vomit, giving medicine constantly, always having to check if she was still breathing… I was sad, I was exhausted, I blamed myself for everything, I felt sorry for her life, and I felt like a terrible mom. Depression for me came out in tears, feeling helpless and defeated, but it also came out in silence, feeling nothing — like our lives would never get better. Like everything was ruined.

5. Acceptance. But in fact, nothing was ruined. Not even close. The last time I sat by myself and felt depressed was the last time. I feel sad that our daughter’s life will have challenges, but I am not sad.

I am in love with my daughter, and although she has a diagnosis, she is exactly who she is supposed to be — same girl today as she was yesterday. And as our hospitalist and nurse assured us, she has always been who she is and will always be who she was intended.

The only thing that has changed is our awareness. Her genetic diagnosis does not define her.

I may have mourned the loss of what I thought having a little girl would be like, but I will never mourn the loss of my daughter because she is here with us — just how she’s supposed to be.

Visit our website, www.my22qt.com, to read more about Izzy’s condition and our story.

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COVER STO RY: NICK DOYLE

MEET THE BIG DOG,

aka Nick Doyle

A shining example of what happens when you give someone an opportunity to show their ability over their disability.

WRITTEN BY MELISSA KLATT PHOTOS BY MICHELLE HERDLICK

L

ocal Stark County resident Nick Doyle is best known by his troupe, The Improvaneers, as the guy who brings the energy and fun. He is a natural leader, and they all look to him as their “big brother.” But what most don’t realize is that Nick has gone through incredible challenges in his 34 years of life and overcame each and every one of them!

THE CHALLENGES BEGIN

An “at-birth diagnosis” — meaning his parents did not have any indication

Nick would be born with Down syndrome until he arrived in the delivery room — the challenges really began then. In 1988, access to information and support was extremely limited, and when you did find something, it was typically outdated by the time you read it. His infant and toddler years were filled with hospital stays, surgeries and therapies, but his parents were determined to raise him just as they had his older siblings.

Nick struggled with some physical challenges, but socialization and education were his strengths

and, ultimately, would become his superpowers! When he entered kindergarten, he became the guy that set “the bar” because of his highfunctioning cognitive levels! But once he transitioned into high school, it became more and more challenging to integrate him in the core curriculum.

“We worked with the Stark County ESC administrators and educators to create opportunities for Nick to remain a core part of the student body by identifying opportunities to choose elective classes such as ASL and horticulture, as well as extracurricular activities such as becoming the baseball team manager,” says mom, Lisa Doyle. “Through these opportunities, he forged what has turned out to be lifelong friendships.”

He worked hard through adversity and graduated GlenOak High School in 2007.

DREAMS INTERRUPTED

The excitement of graduation gave way to broken dreams and lonely weekends. He was very interested in the idea of college life…hanging out on the quad, participating in their sports’ programs, living on his own and being independent, all the things most typical 22

December 2022

18-year-olds are dreaming of, however again, the next set of challenges reared their ugly head and college would not be an option for Nick.

“Most of his friends either started college and moved away or got full-time jobs and started their careers. Some even got married and started families, thus limiting their availability to hang out with Nick,”says Lisa. “We explored his options, but the support and opportunities to do so were virtually non-existent, so he opted to continue to work at his part-time job at Giant Eagle that he got when in school.”

Fast forward, it’s 10 years later. Nick is still at Giant Eagle, but he just auditioned for and was selected to be part of The Improvaneers — The World’s First, All Down Syndrome Improv Group. Nick was invigorated and excited, and the confidence it instilled in him was about to change

his life. But it would not be all sunshine and rainbows, some major challenges were about to try to stop him in his tracks. Over a period of just three short years, Nick would have to overcome: • A life-threatening illness requiring surgery and a lengthy stay and treatment in the CICU. • Deal with his mother’s diagnosis and battle with Stage 2 breast cancer.

• The devastating loss of his first best friend — his big brother Tim who bravely fought but lost his battle with cancer A BORN FIGHTER ALWAYS GETS BACK UP

Nick doesn’t know the word QUIT! No one would have blamed him for pulling back and giving up. But even with all the adversity

ABOUT THE PHOTO SHOOT Special thanks to the wonderful folks at Castle Noel. They were kind enough to allow us to do this month’s cover photo session inside their facility, utilizing their amazing scenery, memorabilia and one-of-a-kind movie props to create some incredible photos for this article. Nick, Michelle and Mike all had the best time doing this photo shoot, I only wish we had a place to show all the “out-take images” that weren’t quite fit for the magazine article!

Castle Noel, America’s Largest Year Round Indoor Christmas Entertainment Attraction, features so many wonderful things to see and do. Housing the world’s largest privately owned collection of Hollywood Christmas movie props and costumes from your favorite Christmas movies, including The Grinch; Elf; Santa Claus The Movie, Fred Claus; The Santa Clause 1, 2 and 3; Jingle All The Way; Christmas Carol; Deck the Halls and MORE.

that Nick has faced, he has always met every challenge head-on, and this would be no different. Nick not only thrived with the Improvaneers, he networked himself into a new professional job with

Also at Castle Noel is millions of dollars of animated NEW YORK CITY Christmas windows from Sak’s Fifth Avenue, Bloomingdale’s, Lord & Taylor, Macy’s Toronto’s Hudson Bay window displays are also set and ready to wow! These amazing windows will delight guests of all ages.

Feel like a kid again in our “I Had That” toyland experience. Filled with thousands of toys from ‘50s through the ‘80s. You’re sure to say “I Had That.”

Sprinkled into the magic is the Blizzard Vortex, Santa’s Chimney Squeeze and 25’ tall animated Christmas tree, It snows inside and you’ll even get to ride a slide, just like Ralphie. Guests who ride the slide over 80 years old become a part of our “Wall of Fame”. To date Castle Noel’s oldest slide rider is 101 1/2 years old.

If you haven’t visited Castle Noel, be sure to check them out. Castle Noel is located at 260 S. Court St., Medina, Ohio 44256. Visit them online at www.castlenoel.com.

Akron & Canton Special Needs Living

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The Improvaneer Method and said goodbye to Giant Eagle after 12 successful years. Now rocking the role of Assistant Director and National Sales Executive for The Improvaneer Method, Nick is stepping into his destiny, changing lives for other people with special needs. Nick travels the country sharing his message and demonstrating the benefits realized through the training his company provides.

The Improvaneer Method was founded by creator and comedian, Rob Snow, with Nick’s help to shoot for the stars! Nick is an original cast member and standout performer. Since early 2020, The Improvaneer Method has been teaching individuals each week, either online or in person. What started out as just a few classes has grown to teaching over 500 individuals weekly. You can learn more about the Improvaneer Method by checking out the August version of this magazine online.

In addition to working at The Improvaneer Method, Nick is also a host at the Applebee’s at Belden Village in Canton. Nick saw this as an opportunity to continue to build his communication skills while making some extra money. It has turned into another extended family for him, and, like most things he does, Nick has excelled here as well. In July, Nick was recognized as the employee of the month, and we are not surprised!

A SEAT AT THE TABLE ON BOARD OF DIRECTORS!

In addition to his current positions, Nick also holds Board of Director positions with two nonprofit organizations, Stand Up for Downs and Gigi’s Playhouse Canton. Both organizations support individuals with developmental and intellectual disabilities. On

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these board seats, Nick’s role is to be the advocate at the highest level of these organizations and to be the representation of the population of people that these organizations are serving. Nick views these Board positions as his way of giving everyone with Down syndrome a seat at the table and an opportunity to be heard.

As Nick continued to flourish, the community began to take notice! Nick has been a keynote speaker for OOD (Opportunities for Ohioans with Disabilities) at their regional conference on multiple occasions, the National Down Syndrome Congress Annual Conference in New Orleans, and the National Leadership Conference for GiGi’s Playhouse in Chicago. Nick has also been featured on the jumbotron at Times Square in New York as part of National Down Syndrome Month, the Kelly Clarkson Show, The List and multiple features on local news stations.

In 2021, he was named to the class of Twenty Under 40, something Nick takes great pride in. Kelly Piero, Director of Marketing for the Canton Regional Chamber stated, “Twenty under 40 is a recognition program through the Canton Regional Chamber of Commerce and their Ystark initiative.

Through this, young professional leaders are recognized and celebrated for making a lasting impact on their community and beyond. Nick being honored as one of our recipients was monumental in so many ways. Nick is so deserving of the recognition, and the program is fortunate to have him in the club of alumni. To date, there have now been 300 individuals given the award, many of whom have gone on to become elected officials, CEOs, entrepreneurs, and more. They remain difference-makers and trailblazers. Nick Doyle is no different!”

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INTERNATIONAL COMMUNITY RESOURCE: WHEELS OF HOPE

WHEELS OF HOPE A PROMISE KEPT BY MARK & SANDY RICHARD Establishing wheelchair repair centers in developing nations as places of ongoing ministry to people with disabilities.

WRITTEN BY MELISSA KLATT

W

heels of Hope has a long, winding history to get to where they are today. Mark and Sandy Richard came up with the idea originated in 1988, when they witnessed a Mayan woman crawling across the Pan-American Highway in the rain. Mark and Sandy made her a promise that they would come back with a wheelchair the next time they visited from the United States.

One year later, Mark and Sandy returned with 15 wheelchairs for her and others with disabilities in Guatemala. During the next five years, Mark established a wheelchair refurbishing center near Alliance, Ohio, and continued distributing them to Mexico and Guatemala!

WHEELS FOR THE WORLD WAS BORN

Before Wheels of Hope, the organization went by a different name.

In ‘93, Mark joined Joni and Friends to direct the new program, “Wheels for the World.” They rapidly spread 28

December 2022

the movement further, distributing to more places, including Ghana, Africa and Eastern Europe. The facility moved to Canton, Ohio, in ‘94, where it currently stands today! (Mark also opened an Iowa location one month later in conjunction with Hope Haven National Ministries.)

Then, Patrick Rimke joined as the new Ohio refurbishing center Supervisor in 1995 by Joni and Friends, having been a volunteer for Mark since ‘89, reconditioning wheelchairs as a wheelchair seating technician. The Ohio facility’s growth was slow until January 1997, and eventually, Joni and Friends moved out west to refurbish wheelchairs in U.S. prisons, ending their financial commitment to the Ohio location.

SUPPORT FROM THE COMMUNITY BRINGS THE ORGANIZATION ALIVE IN A NEW WAY

Due to the overwhelming amount of support, the facility was reopened in July 1997, under its new

name: Wheels of Hope! People from all walks of life come to support Wheels of Hope through donations of wheelchairs, walkers, and other mobility aids, as well as through volunteer opportunities! They desire to train people with disabilities to repair and distribute the wheelchairs with assistance from local churches and charities.

“We need regular volunteers weekly to repair and refurbish wheelchairs, walkers, crutches and many other items,” says Patrick Rimke. “We are also in need of Christminded board members to keep Wheels of Hope moving.”

And the impact of that help is immeasurable… In the past, they’ve worked to establish such centers in Honduras and Bolivia. Since 2000, they’ve helped establish The Wheelchair Project in Chaing Mai, Thailand. They continue to grow their reach to help others, unwavering in their mission: To raise the poor (with disabilities) from the dust and give them a place of physical dignity, spiritual restoration and capability in Christ. Psalm 113:7&8 | Philippians 4:13 | Titus 3:4&5

We are also in need of Christminded board members to keep Wheels of Hope moving

WE’RE NOT THE ONLY ONES WHO THINK WHEELS OF HOPE IS AWESOME

“Wheels of Hope is our first and most loyal partner to date. It is through their efforts that the Wheelchair Project is able to exist today, and we will forever be indebted to the efforts from Patrick Rimke and his team.

During the 17 years of partnership, we have been blessed to receive 22 containers ... nearly 3000 wheelchairs as well as ... innumerable ... mobility aids. Their efforts enable us to serve the people of Thailand who need help.

Without the efforts of partners like Wheels of Hope and the service they provide, our project and the work we do would be impossible.

Their work has directly improved the lives of countless individuals that have come to us for help. We, here at the Wheelchair Project, look forward to many more years of working alongside Wheels of Hope to bring assistance to those that need it.”

FROM THE RICD WHEELCHAIR PROJECT, THAILAND 2016 ANNUAL REPORT

You can join in to support Wheels of Hope! Volunteer your time, donate your extra mobility aids, become a sponsor, or learn more by visiting http://www.wheelsofhope.org/.

As of November 1997, Wheels of Hope is a 501 (c) 3 tax-exempt nonprofit. They continue working hard every day to provide mobility aids to the neediest, often poorest people in developing countries.

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YOUTH FEATURE: BELL A ROS E CARTER

A Story of Love and Family Meet Bella Rose Carter & family WRITTEN BY ANDREA HURR PHOTOS BY JULIAN CURET

H

ailea and Jordan Carter have had a unique journey with becoming parents as they adopted sweet Bella when she was 5 and a half years old after two years of being her foster family. Bella spent 1,225 days in foster care, and they were able to finally adopt her in March of 2022.

She has sensory processing disorder and autism. She was nonverbal when she moved in with Hailea and Jordan, and they have made it their mission to help her thrive! Bella is currently 6 and attends an integrated preschool and uses an AAC (Augmentative and Alternative Communication) device and some verbal language to communicate.

In order to help Bella as much as possible, the Carters have spent much of their time researching autism, accommodations, interventions, etc.

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December 2022

They learned all about feeding issues related to autism and bought anything they thought would help Bella with her sensory processing disorder. They are also quick to give credit to their extended family for being such a great support system as they adjusted to becoming new parents to a special needs child. They also love their church, which has a wonderful special needs program that has helped Bella feel safe and welcomed each week. Bella also loves her therapy time and talks about her therapists (OT and SLP) all the time.

She enjoys going to parks and loves Target (great taste, Bella! Lol).

Hailea keeps a positive attitude with her role as special needs mom.

She says children (and adults) with autism are incredible. “They are intelligent and see the world so differently. The way their brain

processes information is amazing. I think it’s so important to recognize that ‘behaviors’ and the challenges that our children with autism face are a way for them to share their needs,” says Hailea. “Meltdowns” in autism can indicate things such as sensory overload or a need not being met. Stimming (behaviors such as hand flapping, repetitive sounds, or spinning) is an important way for them to regulate their sensory system. Echolalia is a way that many people with autism communicate (where they repeat what they hear in an automatic way).

Hailea says this type of communication is valid and incredibly important to acknowledge as it usually has a deeper meaning. “Allowing them to stim, communicate in their own ways, and giving them the support they need is extremely important to create a community of acceptance.”

Hailea wants parents and families in the special needs community to know that being a parent or family member of someone who has special needs is a blessing. “All disabilities come with challenges and hard times, but they are some of the most amazing

One of Hailea’s favorite quotes is, “You don’t need to be non-disabled to live a good life.” — Sara Luterman

people and make life better!” Her whole life, Hailea has had a heart for people with disabilities because her older sister Chelsea was born with congenital heart defects and suffered a stroke with her second (of three) open-heart surgeries.

Chelsea has been an inspiration to her family and has fought hard her entire life. Growing up with a sister who has special needs taught her family how important these individuals are. She says growing up with Chelsea impacted her and her husband and inspired them to adopt their daughter with special needs.

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December 2022

COMMUNITY SUCCESS STO RY: MARVIN’S GRADUATION DAY

MARVIN’S HOMECOMING It’s never too late to complete the goal ARTICLE AND PHOTOS SUBMITTED BY SUMMIT DD

I couldn’t believe that it finally happened.

I feel much better!.

—MARVIN CONCLUDED.

M

eet Marvin. In 1964, he was set to graduate from Woodridge High School. However, after some confusion on a few class credits, he had to stay another year.

Throughout his schooling, Marvin experienced unbearable bullying from fellow classmates. And in his final school year, it became too much to bear. So sadly, Marvin never received his diploma.

After he left Woodridge, he spent five years in a state hospital.

“It was a nightmare! Nurses at both hospitals said Marvin shouldn’t be in either place. Locked up! But, at that time, there was no recourse,” passionately shared Marvin’s younger brother, Gary. “In 1971, at 17 years old, I drove to the hospital and told the doctor that I wanted my brother home! A week later, he was released. Our family was in disbelief! My older brother came home a shell of the brother he once was. But, he was home … finally,” Gary continued.

This was a painfully difficult reality for many people with

developmental disabilities in that era. However, the story takes a turn for the positive around 1995. “We discovered Weaver around that time!” Gary shared. Which was a term for Summit DD back in the day.

“Marvin truly found a new beginning,” continued Gary.

Jump to 2022, and Marvin has a full support system around him.

It’s composed of his family, medical

professionals, direct support team members, and his Summit DD Service and Support Administrator (SSA). “I never dreamed a support system, as Marv and I have today, would have ever been possible!” Gary passionately shared. “Marvin has been on my caseload since 2005! I am lucky to be a part of this team. Marvin is such a sweet, kind man. And he is surrounded with love and compassion… I am humbled by that,” commented Dayna Jacobs, Marvin’s Summit DD Service and Support Administrator.

But that’s not the end of this story!

Marvin’s cousin Jennifer, a teacher at Woodridge Elementary School, recently wrote the local school board to see if Marvin could receive his diploma after 58 long years. “Their response was almost immediate and positive!” Gary shared. And so, on Sept. 20, 2022, Marvin dawned his cap and gown to finally receive his high school diploma. He was surrounded by his entire support system and loved ones. The room was filled with smiles and tears.

After the heartfelt ceremony that closed out a six-decade chapter, Gary asked his brother Marvin how he felt.

Akron & Canton Special Needs Living

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FAMILY FEATURE: RYAN HOUCK AND FAMILY

A story of how support can go a long way!

MEET THE INCREDIBLE RYAN HOUCK WRITTEN BY ANDREA HURR PHOTOS BY JULIAN CURET

Ryan has MDS, Miller Dieker Syndrome, which is a rare genetic condition that has no cure and a very short life expectancy (which Ryan has surpassed!). Most children pass away by age 2, however, Ryan is 8 and a half, and the Houcks credit a lot of that to his Palliative Care Team, his grandparents, their city, which has earned the title Nicest 34

December 2022

We know the journey as a special needs family can oftentimes be extremely challenging and lonely. It brings strength out of you that you didn’t know existed.

—MEGHAN HOUCK, MOTHER TO 8-YEAR-OLD RYAN.

Place in America by Reader’s Digest, and other MDS families. Meghan’s biggest piece of advice is to find a great support system and ways to bring your family together.

MDS is a life-limiting, rare chromosomal disorder in which the person is missing part of chromosome 17. It is caused by random chromosomal change, and the main

component to it is Lissencephaly, meaning smooth brain. Ryan suffers from global developmental delays, seizure disorders and respiratory issues. He has had 13 surgeries and often staying in the PICU was the norm for them. Eighteen months through 4 years old saw Ryan in the PICU once a month for a week or so during every cold and flu season.

They found some relief in 2018 with IVIG infusions (Intravenous Immunoglobin-a substance made from antibodies that have been taken from the blood of many healthy donors), which have helped his seizures and respiratory illnesses and a BiPap machine at night during sleeping which has kept them out of the PICU for respiratory issues and allowed them more time together.

The “Nicest Place in America” has a renovated theater in the center of town, and they offer special needs productions for individuals with various special needs to shine on stage. Ryan starred as King Triton in the Little Mermaid, an Oompa Loompa and television reporter in Willy Wonka and the Chocolate Factory and young Shrek in the Shrek the Musical. Meghan says they have met so many incredible people and their family members through this opportunity. “We will cherish and treasure these memories forever.”

For his part in The Little Mermaid, Meghan wore Ryan in a baby carrier and helped him act on stage while his dad was off stage reading the lines.

It brought them together as a family and was a truly transformative time for them. Before joining the theater, they kept to themselves about Ryan and his diagnosis. “The support, love and lessons learned from all the participants and their families was incredible.” She goes on to say,

“At that point in Ryan’s diagnosis, we were feeling very down, because at 18 months old, we were moving out of the infant stage, and it was becoming very clear that Ryan was not progressing developmentally.

This production gave us something to do with Ryan, which made us feel normal.” Memories for a lifetime.

As with most special needs parents, finding a support system is instrumental in getting through the days. Palliative Care has been a critical asset to the Houcks. The team has jumped through hoops for them so they can spend more time with their family and not on the phone. Meghan considers the team family and says that they are unsung heroes, “They have the kindest hearts and are so extremely knowledgeable.” There are too many people to list here, but she goes on to thank the team and credit them to getting them through this journey. She also says that there is a stigma around Palliative Care as “endof-life care” only, but Ryan is proof that it is so much more than that. He has already outlived his prognosis four times over and a big reason why is Palliative Care!

Another piece to their support system has been Jack and his mom, Cassie. Jack was another child with MDS, and when you have such a rare condition, it is invaluable to have someone in the same boat. “I always appreciated having someone to ask questions to because many

times, as a special needs parent, you feel as though you are traveling this journey alone, but when you are able to talk to another family that has walked a similar path, it gives you support and reassurance.”

Lastly, family has given them so much. Ryan has two brothers, ages 5 and 2, and the Houcks are so happy that he has siblings. Both boys are extremely loving and gentle with Ryan since day one, and as they get older, they like to do more and more to help him. Ryan, in turn, has taught them empathy and compassion for others — more than they could have learned anywhere else. He has an amazing bond with his grandparents, especially grandmother Nene. She watches Ryan during the day so the Houcks can work their full-time jobs, and Meghan is “forever grateful for Nene’s love and selflessness. We could have never done this without her.”

Ryan has surpassed so many obstacles, and clearly, it is because he is meant to be here and because of the love of so many people. Instead of wallowing in his diagnosis, the Houcks have embraced it and decided to enjoy the time Ryan has here with them.

They found the support they needed in Palliative Care and didn’t let the meaning “end-of-life care” scare them.

They’ve gained so many more years with Ryan because of wonderful people and modern medicine. I have a feeling that Ryan has taught them more than they ever imagined in return.

Akron & Canton Special Needs Living

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December 2022

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Give a gift that gives back. This holiday season, shop artwork, pottery, décor, and much more – all handcrafted by local adult artisans with developmental disabilities.

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Information@ChooseTWi.com @JustImagineGallery 38

December 2022

EDUCATIONAL PERSPECTIVE: ABCS OF IEP S

SPECIAL EDUCATION TERMINOLOGY What is the difference between a 504 and an IEP?

BY REBECCA MCCLARY, SPECIAL NEEDS MOM AND PARENT ADVOCATE

N

ow that we are a solid nine weeks into the school year, are you wondering if your child could benefit from a 504 or an IEP? Maybe your son/daughter is already on one, but it does not seem to be working as well as you had hoped. Knowing the purpose and benefits of each can help you determine what is best for your child.

LEGAL RIGHTS: According to Understood.org, the 504 plan is an educational plan designed to give students with disabilities the same access to FAPE (fair and appropriate public education) as their peers. This plan protects the civil rights of our students under section 504 of the Rehabilitation Act. If a child needs an IEP, this legal right is protected by IDEA (Individuals with Disabilities Education Act). These students are to be given the LRE (least restrictive environment) to learn in.

This means schools are to provide the child’s education alongside their peers as much as possible.

While IEPs require parental consent to provide the individualized services, a school can put a 504 plan into action for a student by just notifying parents of any evaluations completed. If an IEP is thought to be the best plan of action, an ETR (Evaluation Team Report) must be completed and discussed in order to determine eligibility.

BOTTOM LINE: When someone asks me how to figure out if their child needs a 504 or an IEP, I always ask them what they believe is better and why. From there, I ask more questions and guide them to make the decision that they

I know this is a lot. It is overwhelming.

It is stressful.

But I promise that advocating for your child will ALWAYS be worth it

feel is best for their child. Remember: You know your child best! Seeking out a parent mentor can be a helpful tool to teach and guide you when making these decisions. I often say that if a child needs accommodations, such as a quiet environment to take tests in, an elevator key to access all floors, sitting in the back of the class to lessen anxiety or extra breaks to take medication or help with focus, then exploring a 504 plan could be a great option. Whereas, if your child’s disability is causing challenges with turning in assignments on time, needing extra support for daily lessons and tests, struggling to grasp concepts at grade level, or their social skills are proving to be such a challenge that it is affecting their ability to access their regular education, you may want to ask for an evaluation to determine if an IEP would help. Either way, send your request for evaluation/meeting to your school representative in written format.

HELPFUL RESOURCES: These resources are my go-to for reliable information.

Education.ohio.gov — special education guide Ocedcd.org — Ohio Coalition for the Education of Children with Disabilities Wrightslaw.com

I know this is a lot. It is overwhelming.

It is stressful. But I promise that advocating for your child will ALWAYS be worth it! Knowing your parental rights can be the difference between a stressful school experience and a smoother one. Changing the environment, not the child, is how we can make a difference in their educational journey.

Akron & Canton Special Needs Living

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NONPROFIT SP OTLIGHT: SUMMIT DD

MAKING MEANINGFUL CONNECTIONS Get to know summit DD WRITTEN BY SARAH SMITH PHOTOS COURTESY OF SUMMIT DD

S

ummit DD is a levy-funded government organization that provides and coordinates essential services for more than 4,700 people with developmental disabilities throughout Summit County. Whether it’s early intervention services for a newborn child, employment services and transportation for some adults, or independent living skills for others, Summit DD provides a lifetime of support for those eligible for its services.

In July 1949, Summit County began providing community-based disability services in two small classrooms in the basement of an Akron church. Parent advocates continued to advocate for training and education programs, and by 1968, Summit County’s first “Board of Mental Retardation” board members were sworn in. Thanks to the efforts of these parent advocates, the Ohio County Board system was created.

The Weaver School and Workshop opened in Tallmadge in 1971, and two more adult centers opened by the end of the decade. Residential programs began with the goal of bringing individuals who lived in institutions back to Summit County. By the end of the 1970s, more than 1,100 adults and children were served, and Summit DD offered social services, home

training, preschool, school services, adult services, residential services, and transportation.

Summit DD is the community resource that connects adults and children with developmental disabilities and their families to services and supports in Summit 40

December 2022

It is the Agency’s goal to connect people with disabilities to supports that empower each individual to contribute to their own success

County. It is the Agency’s goal to connect people with disabilities to supports that empower each individual to contribute to their own success and to that of their community. Helping people of all abilities reach their full potential,

one person at a time, is Summit DD’s mission.

One such person is 76-year-old Marvin, who has a full support system to provide assistance. The team is composed of his family, medical professionals, direct support team members, and his Summit DD Service and Support Administrator (SSA). “I never dreamed a support system, as Marv and I have today, would have ever been possible!” Gary, Marvin’s younger brother, shared.

In addition, through an essential Summit DD program, Jason has access to crucial assistive technology devices that help him access the world. Using digital braille devices, Jason can email and text on his computer and cell phone with family, friends, and support staff. He has become so skilled in technology, that he trains other individuals who are deaf and blind by working for a federally funded program called I Can Connect.

A look at Summit DD by the numbers highlights the impressive scope of the organization: • More than 1,000 children and families from birth to age three receive early intervention services from Summit DD. These services are provided at no charge to families and individuals who qualify for Summit DD services.

• More than 2,300 teens and adults are enrolled on a Medicaid Waiver through Summit DD for essential services.

• Summit DD helped fund approximately 400 Summit County Special Olympics athletes last year.

• 629 Families accessed Family Engagement Program (FEP) funds

to provide access to community classes, camps, special equipment, and COVID-19 or respite needs.

• Summit DD invested more than $550,000 local dollars in providers and early childhood workers for appreciation, retention, and Personal Protective Equipment (PPE) initiatives.

• The organization’s investment in the Medicaid program invests $60 million of federal dollars directly into the local economy.

• Nearly 400 new individuals (ages 3 and up) were found eligible for services last year.

• Summit DD connects and funds services for people through more than 900 private providers throughout Summit County.

• The investigation team closed more than 1,100 Major Unusual Incidents (MUI) with 99.8% ontime performance.

Thanks to the support of the wonderful Summit County community, Summit DD can fund, coordinate, and provide services like early intervention, day programs, transportation, and in-home supports, that more than 4,700 children and adults rely on each day to reach for their goals. More than 89 percent of Summit DD’s funding comes from an operating levy, which will be on the ballot in November 2023.

More information can be found at www.SummitDD.com or by calling 330-634-8000. Summit DD is located at 2355 Second St., Cuyahoga Falls, Ohio 44221.

Akron & Canton Special Needs Living

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Building Skills.

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ENRICHING LIVES THROUGH EMPLOYMENT

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INSPIRATIONAL PERSPECTIVE: KYLE NOTTINGHAM

OVERCOMING CHALLENGES You are going to love getting to know Kyle Nottingham WRITTEN BY DEBORAH RILEY PHOTO BY JULIAN CURET

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December 2022

Kyle Nottingham is an impressive young man who has overcome the odds time and time again. Throughout his 14 years, he has conquered many challenges in his life. After not meeting milestones as an infant and toddler, Kyle was initially diagnosed with Cerebral Palsy in 2009. However, two years later, in 2011, it was determined that Kyle did not actually have Cerebral Palsy. In fact, he was diagnosed with Leukodystrophy. “Leukodystrophies are a group of rare, progressive, metabolic, genetic diseases that affect the brain, spinal cord, and often the peripheral nerves.” (https://rarediseases.org/rare-diseases/leukodystrophy/) Kyle has experienced multiple surgeries, numerous hospital stays, lung collapses, intubation, and even cardiac arrest in January of 2022. Through it all, his mom Jenny has been there by his side, working with his doctors to advocate for Kyle’s needs. Jenny has worked hard to build a team of doctors whom she is able to trust. Jenny loves his care team at Akron Children’s Hospital. She wants parents to know that you don’t have to stick with a doctor you don’t like.

She says to make sure that you like and trust the doctors in charge of your child’s care.

Leukodystrophy has created and continues to create many challenges for Kyle to surmount. According to Jenny, Kyle is dependent on others for all aspects of his care, is non-verbal, and utilizes a manual wheelchair.

At school, Kyle utilizes a “talker” with a switch, while at home, he raises his left arm to indicate an answer of “yes.” The Nottingham family lives in a two-bedroom,

two-story home in Massillon. They have had to make accommodations to their home, such as turning their dining room into a bedroom for Kyle. Jenny feels fortunate that Kyle’s waiver was able to cover a new wheelchair lift for the front of his house, as their previous ramp was not adequate. His waiver also allowed for a walk-in shower to be installed to accommodate his bath chair. However, one thing that Jenny feels would make their life much easier would be a wheelchair van with a lift. Unfortunately, the cost has prohibited them from obtaining one.

In many ways, Kyle is a typical eighth-grade boy attending Massillon Junior High. He’s outgoing with a great sense of humor. He enjoys art class, hard rock music (the harder, the better), the Kansas City Chiefs, the Akron Rubber Ducks, and loves to flirt. His personality is infectious, and people are genuinely drawn to him! He loves being with his peers and is very social!

Kyle is an active guy! Before COVID-19, Kyle participated in Dance Unlimited through the Akron Children’s Hospital and camp through the ARC. He has even thrown out the first pitch at the Akron Rubber Ducks a few times. Currently, he participates in the Canton Challenger Baseball League and loves his team.

He’s got a special group of boys on the team who he is especially close to. In 2019, he was introduced to the running community when he was chosen as mile marker 25.5 Super Hero for the Akron Marathon. Through someone he met during the marathon, Kyle was introduced to the idea of “running” a race. Since then, with his friend Sarah, Kyle has participated in multiple local 5k races and two of the races in the 2022 Akron Marathon Race Series. Sarah pushes him in the races using a special needs running cart. Sarah and Kyle have a special relationship, and Jenny jokes that Sarah is the puppet and Kyle is the puppet master. Sarah helps a

lot with Kyle providing childcare and assisting when he’s in the hospital when they’re not running races together.

Kyle is an amazing guy who you can’t help but love for his personality and admire for all that he continues to overcome. I will leave you with these words from Jenny, “Even though your child is different, try not to treat them any differently. Don’t let their disabilities define them. They are aware of more than you think. Everything we do, we try to make it so that Kyle can be included and not treated differently than anyone else.”

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December 2022

AUTISM PERSPECTIVE: DR . KRISTINE TURKO

HEY! WHY WASN’T I INVITED TO THAT PARTY? Navigating the holidays with an autistic loved one

BY DR. KRISTINE TURKO, BCBA, COBA

A

utism is a developmental disorder characterized by symptoms associated with social communication, restricted interests and stereotyped behavior.

Social challenges include everything from difficulty making eye contact to misunderstanding subtle cues. The term “restricted interests” is used to describe an interest in something that is so strong it gets in the way of completing other important tasks.

Restricted interests are also associated with challenges when transitioning from one activity to the next and adjusting to new situations. Finally, stereotyped behavior, also known as stimming, includes a repertoire of repetitive actions like rocking, hand flapping and hair pulling. The symptoms of autism vary greatly from one person to the next. In addition, autism is a non-apparent disability, which means that there are no identifiable physical characteristics.

To an outsider who is unaware of an autism diagnosis, they may think a child is misbehaving or a parent is not disciplining the child appropriately.

The holidays are often characterized by heartwarming images of loving family and friends gathering to celebrate, but in reality, they are a time of stress and loneliness for many.

For families navigating the holidays with an autistic loved one, the stress can be stifling — leaving them feeling isolated and wondering why those they

love are not including them in family plans. Whether you are an autistic member of the community or the friend or family member of an autistic person, understanding individual differences and how to talk about them is critical in navigating relationships. Here are some suggestions to help enjoy the holiday season.

• Stick to your schedule: Knowing that transitions can be tough, remember that schedules can help create the structure needed to reduce anxiety. Don’t feel pressure to plan the entire holiday season.

Taking it one day at a time is a good strategy, especially while you are on break from work or school.

Plan your days with the family.

Allow everyone to take control and ownership over what is happening. While some things may not be up for negotiation, there is always room for compromise.

So, if dinner on Christmas Eve is being hosted by Grandma, you can choose when you arrive and leave.

You can also create a plan to find space away from the crowd if you need a break.

• Prepare for events with practice: Haven’t been to Grandma’s house in a while? Looking at pictures and sharing stories about positive past experiences can help prepare for an upcoming visit. Discuss travel plans openly and think about supports for situations

that typically cause stress and frustration. Look at the directions on a map, play games in the car, and decide before any event what someone can do if they are feeling frustrated. Finding a quiet space or having a code word that lets someone know you are feeling overwhelmed can both be helpful in avoiding escalated behavior.

• Avoid sensory overload: Holidays are filled with stimuli — music, crowds, and lots of bright lights, just to name a few. If crowds are overwhelming, plan trips to stores during hours that are less busy.

Headphones can help damper noise in loud environments.

• Have a backup plan: No matter how carefully you plan, there will likely be some unexpected situations. Give yourself (and others) grace. If an event or situation becomes too difficult to handle, have a family plan. Family is a team, and everyone can work together to work toward the goal.

• Share strategies with friends and family: Once you take the time to plan and prepare, share your plan with others. Let your friends and family know that time together is important, and while your choices make look different than theirs, they should be valued equally.

Make sure you set goals that are achievable and celebrate your victories. Happy New Year!

Dr. Kristine Turko is the Founder and Director of the Spectrum Education Center at the University of Mount Union.

Akron & Canton Special Needs Living

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PICTURES SAY THOUSANDS OF WORDS … ABOUT SAVANNAH STAGLES

Beauty Belongs to Everyone Introducing Savannah Stagles simply through images 48

December 2022

It was a Silent Night, Holy Night. All was calm and all was bright the day this world received the greatest gift it could have ever been given. It was the Birth of our Lord and Savior, Jesus Christ. Jesus is now waiting to offer to you the greatest gift that you could ever open during this Christmas season. It is the gift of Eternal Life.

Come to Harvestime Temple and celebrate His birth with us. All are welcome! Let us worship Him together.

Pastor Raymond Smith II

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Akron & Canton Special Needs Living

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December 2022

COMMUNITY IMPACT Q & A : KAREN L AYTON

QUESTION AND ANSWER SESSION WITH A COMMUNITY RESOURCE Karen Layton, Adult Services Director at Pegasus Farm WRITTEN BY MIKE STURDIVANT AND KAREN LAYTON

Question: Where do you work currently?

Answer: I currently work at Pegasus Farm.

Q: What is your job title here?

A: My job title is Adult Services Director.

Q: How long have you been employed with your current job?

A: I have been employed for over 23 years.

Q: How long have you been employed in this industry?

A: 23 years Q: Educational background:

A: My educational background is in accounting.

Q: What other professional associations are you a member of? (Board of Director, Volunteer organizations, etc.)

A: I am an active volunteer in my church, in children’s and ladies’ ministries.

Q: What do your day-to-day job responsibilities include?

A: Managing all aspects of the Adult Day Services at Pegasus Farm, which include the Voc Hab program, NMT Services, Employment Services and the Pegasus Farm Country Store.

Q: What is the inspiration behind why you work in this field?

A: The inspiration for me started when I was a volunteer in the Equestrian Program at Pegasus Farm prior to joining the staff. I saw our riding students accomplish what others thought couldn’t be done and had the privilege of celebrating their successes with them.

Q: What part of your job are your most passionate about?

A: Never say “can’t.” Empower and support individuals with disabilities to make choices for their lives and experience success.

Q: What advice would you give to someone who is new to your field?

A: Take time to get to know the individuals you serve and listen to their stories, get to know what they like and what they want to accomplish.

Q: What is something you would change in your field for the better if you could?

A: I would like to see individuals have more choice and easier access to services.

Q: What has been the biggest factor in your career success?

A: Good mentors and a great support team.

Q: What is your favorite nonprofit organization or volunteer opportunity?

A: Pegasus Farm!

Akron & Canton Special Needs Living

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SP ONSOR SP OTLIGHT: REM OHIO

REM OHIO

Growth and independence for all abilities

WRITTEN BY SARAH SMITH

REM Ohio is a leading provider of home and community-based care for Ohioans with intellectual and/ or developmental disabilities.

The organization believes that everyone deserves to live a full, more independent life. REM provides individuals with quality services and personalized supports that lead to growth and independence, regardless of the physical, intellectual, or behavioral challenges they face.

The organization has made this our mission for more than 50 years, and today the 40,000 team members nationwide continue to innovate and enhance care for 50,000 individuals.

REM Ohio has a long history of supporting all people with DD. When a need in the community is identified, the company develops a service to meet that need. REM has consistently developed specialty homes when the need was identified.

Homes have been designed to support people with Autism, Prader-Willi, diabetes, and more. The leadership team at REM Ohio is committed to supporting people with the highest quality possible.

The REM brand was started by Robert E. Miller in Minnesota. Bob had the desire to move people out of large state-run institutions, so he began opening smaller homes in the community to support these people.

REM came to Ohio in 1987.

“I began employment as a Program Director the day after our first home opened here, opening adult foster homes to support people with developmental disabilities,” said Jo Spargo, Executive Director. “REM Ohio has since grown to support more than 1,200 people across the state in more than 40 counties. Our leadership team is committed to quality services

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to people with DD in all of our locations and services.”

REM is a large company with vast resources and yet seeks to maintain the family-like connection of a small provider. This allows the company to reach more people, employees, and individuals with intellectual and developmental disabilities. REM believes every person has the right to live well, and the company continues to grow and support more people to do just that.

Ohio is rich with services for people with DD, often making it difficult for caregivers to navigate those services. REM seeks to partner with the families who receive our services. Transitioning to adult services from children’s services can be particularly challenging. REM has been navigating this process for over 35 years and is a valuable resource.

“When I sought my first position as a young social worker, the DD industry had numerous openings, so I decided to try a job in that field,” continued Spargo. “I had exposure to people with DD growing up. More than 35 years later, I know I am blessed that I was led to a position where I could make a difference and impact so many lives. I cannot imagine working with any other population.”

As the mother of a son with special needs, Spargo is a tireless advocate for people with DD. She has served on Ohio’s DD Council

by Governor’s appointment for seven years from 2013-2020. While serving on this council, she has been the Chair, Vice Chair, and Public Policy Chair. Spargo attends annual legislative advocacy events in Washington, D.C., meeting with legislators or their aides to advocate for issues important to the DD community. In addition, Spargo

has served as an Ohio Health Care Association IDD board member for the past three years.

REM advances its mission and vision through philanthropic and socially responsible investments and activities that benefit the individuals the company serves, our employees and contractors, and the communities in which we work. REM does this through charitable foundations called Community Partners and Community Champions, Network Angels, and through the Annual Volunteer Day. Because of these efforts the company has helped 630 team members and families in need through Network Angels with $990,000 of assistance provided since 2010. $2.65 million in grants have been awarded through the charitable foundations. The employees have volunteered for 372 projects across 36 states in the annual Volunteer Day.

REM Ohio, Inc. is a Sevita Healthcare Company and is located at 470 Portage Lakes Drive, Suite 206, in Akron. More information can be found at www.rem-oh.com or by calling 330-644-5216.

Akron & Canton Special Needs Living

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Savannah Stagles

FINAL TAKE

Izzy Rowlands

December issue photo finish PHOTOS CAREFULLY SELECTED BY MIKE STURDIVANT

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December 2022

Mike at Castle Noel

Nick at Castle Noel

Ryan Houck and Family

Nottingham Family

Bella Rose Carter

Summit DD

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5051 New Centre Dr Wilmington, NC 28403

A Social Publication for the Residents of Akron & Canton

REM Opportunities

REM Inspired Opportunities

Soc and Voc Hab Services

Autism Friendly Soc and Voc Hab Services

• Computer lab, Beauty Salon, Craft & Game areas

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Well-trained staff familiar and sensitive to needs of those living with autism

• Sensory Room, and more!

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Structured, visual schedules

• Thriving area offering many

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Sensory room, ipads, and more

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Thriving area offering many opportunities for community involvement

opportunities for community involvement

4183 Wyoga Lake Rd Cuyahoga Falls, OH 44223 (right behind the Wing Warehouse) For more information, please visit www.rem-oh.com or email tracy.hornish@sevitahealth.com