living
Special Needs
August 2021
Indianapolis & Surrounding Areas
TO RECEIVE THE DIGITAL COPY TEXT: SNL TO 55433 INSIDE: • Marvelous Margaux • Living with Spinal Muscular Atrophy (SMA) • Meet the Barquet Family • Gluten-Free Lunch Ideas • Meet the Davis Family • Pastors Corner – ISP (Individualized Spiritual Plan) • Sponsor Spotlight: Dynamic Minds Academy • Non Profit Highlight – Agape Therapeutic Riding • Pioneer Parents: Donna G. Olson • The ABC’s of IEPs • Local Events and More
ON THE COVER:
Meet the Ludington-Barquet Family Mariana, Darren, Sofia, Jack
SAVE THE DATE Upcoming Family Fun Day at Adrenaline Family Adventure Park August 28, 1–4pm
CONNECTING - INSPIRING - EDUCATING - FAMILIES WITH SPECIAL NEEDS
2 Special Needs Living • August 2021
More than a Trampoline Park Adrenaline is the perfect place for an adventure! Have a blast jumping on trampolines (of course), channeling your inner ninja warrior, making it to the top of the climbing wall, or challenging your friends in jousting. We are the largest indoor adventure park in Indiana, with 50,000 square feet of attractions, including our ALL NEW ropes course, warped wall, stunt fall, all sports course, harnessed climbing wall
and MORE!! Sensory Friendly Play every Monday from 11:00 a.m. - 4:00 p.m. Call or email to reserve your spot!
10080 E 121st St Suite 182 Fishers, Indiana 46037 317-572-2999 adrenalinefishers1.com events@adrenalinefishers.com August 2021 • Special Needs Living
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Carmel & Shelbyville IN rigsbeeorthodontics.com 317-574-0612
Noblesville & Elwood IN hallmarkorthodontics.com 317-773-5515
4 Special Needs Living • August 2021
I M P O RTA N T
N UMBE R S 317-977-2375
Arc of Indiana www.arcind.org
317-257-8683
ASK: About Special Kids, Inc. www.aboutspecialkids.org
317-676-4222
Autism Community Connection www.autismcc-in.org
800-609-8448
Autism Society of Indiana www.autismsocietyofindiana.org
877-241-8144
Blind and Visually Impaired Services (BVIS)
800-545-7763
Bureau of Developmental Disabilities Services (BDDS)
800-545-7763
Bureau of Rehabilitation Services (BRS) Deaf and Hard of Hearing Services (DHHS) DHHSHelp@fssa/in.gov
www.n2pub.com Turning Neighborhoods Into Communities © 2021 Neighborhood Networks Publishing, Inc.
AREA DIRECTOR PUBLISHER
Jamie McCabe jamie.mccabe@n2pub.com
317-233-4454
Indiana Family and Social Services Administration (FSSA) - www.in.gov/fssa/index.htm
317-232-7770
Indiana Governor’s Council for People with Disabilities (GPCPD)
812-855-6508
Indiana Resource Center for Autism https://www.iidc.indiana.edu/irca
317-233-1325
Indiana State Department of Health
844-446-7452
Indiana Statewide Independent Living Council (INSILC)
855-641-8382
Indiana Works
800-332-4433
INSOURCE http://insource.org/
800-622-4968
Disability Determination Bureau
888-673-0002
Division of Aging (IDA)
800-457-4584
Medicaid Disability
800-403-0864
Division of Family Resources (DFR)
317-232-7770
Medicaid Waivers
317-232-7800
Division of Mental Health and Addiction
800-772-1213
Social Security Administration (SSA)
317-925-7617
Down Syndrome Indiana
877-511-1144
Early Childhood and Out of School Learning (OECOSL)
317-466-1000
Easterseals Crossroads https://eastersealscrossroads.org
911
Social Security Disability Insurance (SSDI)
877-851-4106
Special Education Questions
317-871-4032
United Cerebral Palsy Association of Greater Indiana
800-545-7763
Vocational Rehabilitation Services (VR)
Emergency
844-323-4636
Family Voices Indiana www.fvindiana.org
800-545-7763
First Steps
574-234-7101
INSOURCE www.insource.org
317-232-0570
1-800-772-1213
Indiana Department of Education: Office of Special Education www.doe.in.gov/specialed
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.
August 2021 • Special Needs Living
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Sponsor I N D E X Neighborhood
Thank you to all the below businesses who have chosen to support Special Needs Living magazine each month!! They would be delighted to help you with your next project or need. If you know of a business who helps those with Special Needs and would be a good resource to families please email us to let us know. Jamie.McCabe@n2pub.com
ABA & COMPREHENSIVE SERVICES K1ds Count Therapy (317) 520-4748 ABA SERVICES Autism Center for Enrichment (317) 436-7080 Mindful and Modern ABA Therapies (317) 827-7777 The Indiana Institute for Behavior Analysis, LLC (317) 388-8131 ABA/COMPREHENSIVE SERVICES The Hope Source (317) 578-0410 ACCESSIBILITY PRODUCTS AMRamp (260) 519-1935 ACCOUNTING/PAYROLL/TAXES Borshoff Consulting LLC. Sherry Borshoff (317) 902-6539 ADULT DAY CENTER Adult Day Centers Jay Lugosch (317) 296-8815 ADVOCACY/EVALUATIONS PEAS for Kids (920) 980-1172 ASSISTANCE DOG Indiana Canine Assistant Network, INC. (ICAN) (317) 250-6450
6 Special Needs Living • August 2021
ATTORNEY-WILLS/TRUSTS/ ESTATE PLANNING Law Office of Elizabeth A. Homes LLC (317) 660-5004 CASE MANAGEMENT Connections Case Management (317) 440-0637
FUNCTIONAL MEDICINE Wholestic Nutrition (317) 429-0111 GYMNASTICS Body by GymRoots Studio (317) 579-9300
IPMG - Indiana Professional Management Group (866) 672-4764
HEALTH & WELLNESS LifeVantage - Team Richards Kristin Richards (317) 698-5264
CAT CARE & SITTING Bastet Cat Care & Sitting (317) 919-1948
Ritello Clifton Herbert (661) 317-6157
CBD SUPPLIER Indy CBD Plus (317) 961-0191
INDOOR TRAMPOLINE PARK Adrenaline Family Adventure Park (317) 572-2999 adrenalinefishers1.com
COFFEE ROASTER Tinker Coffee Co. (317) 438-5728 DAY / BEHAVIORAL SERVICES Developmental Disabilities Systems INC. - DDSI (317) 477-8240 DENTAL CARE Children’s Dental Center (317) 842-8453 FINANCIAL Munder Financial James Munder (317) 238-6621 WestPoint Financial Group Gordon Homes (317) 567-2005
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 MOBILITY / ACCESSIBILITY CYA Mobility (317) 530-2541 MORTGAGE CrossCountry Mortgage (317) 666-4679
NEUROFEEDBACK THERAPY Indy Neurofeedback (317) 888-8500 ORTHODONTICS Hallmark Orthodontics (317) 773-5515 Rigsbee Hall Orthodontics (317) 574-0612 PEDIATRIC THERAPY Wee Speak (765) 446-8300 REAL ESTATE Encore Sotheby’s Patti & Jeff Carroll (317) 809-5839
SCULPTURE, POTTERY & ART Ripple Mobile Arts (317) 514-8469
REALTOR F.C. Tucker Nicole Lyon (317) 501-0639
SPECIAL EDUCATION CONSULTING IEP Services, LLC. Sheila Wolfe (317) 573-9610
REGENERATIVE MEDICINE/ STEM CELL THERAPY Destination ReGen (317) 522-1980 REMODELING/CONSTRUCTION Ray’s Construction LLC Ray Valverde (317) 515-5308 SCHOOL Dynamic Minds Academy (317) 578-0410 SCHOOL - SPECIAL NEEDS The Fortune Academy (317) 377-0544
SUPPORT SERVICES Easterseals Crossroads (317) 466-1000 The ALTRUIST Group, LLC (317) 547-3041 x1005 THERAPY & TESTING SERVICES The Brain Center (317) 748-0034
Roadmap to your waiver journey:
Journey Destination To-do:
Visit the BDDS new Gateway @ bddsgateway.fssa.in.gov Select your tour guide (CMCO) Plan your Person-Centered Adventure! Call Connections to get directions!
Connections provides Medicaid Waiver Case Management and serves all Indiana counties.
Connect with our case managers today! 317-710-7184 • connectionsin.com August 2021 • Special Needs Living
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MEET THE Special Needs Living JAMIE MCCABE Publisher & Area Director
BRITTANY LOWE Event Executive
HEATHER GREGG Photographer 21 Vines Photography
MARIA SMIETANA Editor & Writer
The Brain Center
TEAM WRITER & CONTRIBUTORS
ANGELA ARLINGTON
PAUL HATHCOAT
ZACH ELLIOTT
MATT KNIGHT
ANGELICA N. GRAY, MA, BCBA, LBA
MAUREEN MARSH
Comprehensive outpatient neuropsychological and psychological assessment services for children, adolescent, adult, and geriatric patients in whom impairments of cognitive or neuropsychiatric functioning are evident or suspected.
Psychotherapy for children, adolescents and adults.
CHRISTINA MCGAIRK Editor and Writer
CARLA MILLER
LISA MONGE
AARON OLSON
SHANNAN PENAFLOR
LAURA SPIEGEL
SHEILA WOLFE
REBECCA WOOD
DEANDRA YATES
Neuropsychological Testing Forensic/Legal Evaluations Psychotherapy & Caregiver Consults CogMed Training Animal-Assisted Therapy
317-748-0034 braincenteratgeist.com 8 Special Needs Living • August 2021
publisher’s note Social with SNL Team and Supporters!
Special Needs Living Community, I am so thankful for all the heartfelt stories that are being shared each and every month. There are many times as a parent who has a special needs child where I feel a bit overwhelmed and perplexed as to some of the behaviors our son has. The stories shared have helped to shift my perspective and give me hope and inspiration. I hope they have for you as well. We are looking for people who enjoy reading out loud and would want to help read past stories to include in an audio format to allow for the stories to be played and listened to. If you or someone you know may be interested, give me a call at 248-882-8448. We have our first in-person event/social coming up at Adrenaline in Fishers on August 28, 1–4pm. This will be a great way to connect with other families and enjoy a day of fun!! There will be no charge to you and your family to join us during this time. Please register for the event to reserve your spot. Here is the link: https://www.eventbrite.com/e/special-needs-living-social-atadrenaline-family-adventure-park-tickets-160456807631
Special Needs Living is designed for individuals with special needs and families who have a child with any type of special need, whether psychological, behavioral, emotional, or physical. Stories will largely be written by our readers. It is for you, by you, and meant to connect you. Oftentimes we can feel alone and isolated in the world we live in today. The stories shared here will give hope, inspiration, and encouragement, perhaps even shift your perspective. If you have a story you would like to share, you are welcome to email us at SpecialNeedsLivingIndy@n2pub.com or check out
our Linktr.ee/Community.Stories to view some of the story template options. Or scan this QR code to submit the story. QR code to submit a story
QR code to view all past issues of Special Needs Living
Huge thank you to all the supporters helping to make Special Needs Living possible monthly. If you would like to be involved in any way, or for more information on how you can support or sponsor, please email me Jamie.McCabe@n2pub.com. You can follow us on our Facebook page: Special Needs Living magazine to view our monthly digital versions and to keep up with events, stories, and things we are looking to add to the magazine. If you would like to receive the digital version monthly, just text the letters SNL to 55433. We hope you enjoy the August issue of Special Needs Living. We welcome feedback and are excited to bring this magazine and resource to you each and every month! Your Publisher, Jamie McCabe 248-882-8448 Jamie.McCabe@n2pub.com August 2021 • Special Needs Living
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This Magazine is
– FO R YOU – BY YOU –
To Support & Connect You H E R E IS HO W YOU CA N BE I N V OLV ED promotions
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. 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? Email us 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.
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: 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.
Do you run a business that supports the special needs community and are looking to advertise and support the Special Needs Living magazine email: Jamie.McCabe@n2pub.com or book a virtual or in-person apt here https://calendly.com/ jamie-mccabe/special-needs-living-magazine
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).
10 Special Needs Living • August 2021
ARE YOU READY TO MAKE
A TRUE DIFFERENCE? Then it’s time to join us at The ALTRUIST Group
The ALTRUIST Group incorporates the T.R.U.E. model. Our unique client focus (1) attracts top quality staff and (2) ensures service levels that exceed expectations. The ALTRUIST Group was founded by passionate professionals who are committed to leading by values to achieve their vision. Because we have family with intellectual disabilities, we empathized with the support and considerations our loved ones deserve. We have made a career of championing vulnerable populations. While doing so, we have brought along staff and team members with the same mission in their hearts.
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In-Home or In-Studio Classes August 2021 • Special Needs Living
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HEART SOS Services for Individuals & Families
Hope, Love, & ASD: Building Skills for Life Want more confidence? Mental Health Counseling can help you get unstuck.
What to go on a dinner date? Occupational Therapy can help you dress to impress.
Want to advocate for yourself? Speech Therapy can help you communicate your needs.
Want to try new things? Behavior Consultation can help you become more flexible.
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A New Service Model by The Hope Source
We hear your SOS!
Reach out today at asdheartsos.com 7739 E 88th Street Indianapolis 46256 1318 Ohio Street Terre Haute 47807 12 Special Needs Living • August 2021
Therapeutic Education for ASD Our mascot, the dragonfly, represents the mission of our model perfectly. The dragonfly symbolizes change, adaptability, self-realization, emotional depth, and lightness. Not only can it quickly adapt to it's environment and change it's course, it does so with confidence. We aspire to be like the dragonfly in our journeys of personal growth, even when it seems impossible. The dragonfly has so much strength; it can fly through a storm. Our mission is to help our clients and students with ASD gain knowledge that will build competence in social, academic, and vocational areas of their lives. With dynamic skills they can navigate any challenges they encounter with confidence, just like the dragonfly. -Julie Gordon
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Enroll today at dynamicmindsacademy.org August 2021 • Special Needs Living
13
By Sheila Wolfe IEP Services
The ABCs of IEPs
We have covered quite a bit on the appropriate content in an IEP and how to determine the needs of a particular child with a disability in previous articles. But what happens when you have developed an appropriate IEP, but the school is not implementing it as written? What happens if the school refuses to provide needed services? This is when parents need to pursue one of their administrative remedies.
Do you need help getting your child with special needs the services they NEED and DESERVE at school? Professional Parent Advocate with 20 Years Experience Specializing in Developing IEPs that WORK Experienced in All Disability Categories Autism Expert Helping families receive a meaningful education for their children in public schools
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sheilawolfe@sbcglobal.net Please email for more information.
14 Special Needs Living • August 2021
Article 7 Rule 45 contains the law regarding the available administrative procedures parents may decide to engage in to compel a school to follow an IEP. These administrative options can also be used to resolve disagreements between parents and schools regarding the appropriate content of an IEP. This often happens when a school is not providing the services and supports spelled out in the IEP and/or when a school will not provide supports and services the parents feel their child requires to learn and make meaningful progress. MEDIATION: A parent (or school) can request mediation whenever there is an issue that seems to have reached an impasse. These issues are usually ones of philosophy or opinion regarding what the student needs for the IEP to be appropriate. Mediation is completely voluntary and either party can refuse the request for mediation. If the parents and school agree to go to mediation, the Indiana Department of Education randomly assigns an independent mediator to hear the “case.” This mediator’s role is to bring both sides to an agreement that usually involves meeting somewhere in the middle on the issues. This can be highly effective if there are many issues in dispute between the school and the family. The downside to mediation can be the knowledge of the mediator regarding special education law and best practices in education. The mediator is usually not an attorney and does not have expertise in special education matters. Their skillset involves promoting compromise so that each side “wins some” and “loses some.” This can be a “hard sell” when families and schools have very definite (but different) ideas about what the student needs to enable them to learn and progress. STATE COMPLAINT: When there has been a direct and documented violation of the terms in the IEP, and the school is not responsive to the parent’s request for correction, I recommend
the family file a complaint with the State Department of Education. An example of this might be when a student is to receive 60 minutes of speech therapy each week, but the speech therapist has been out on maternity leave and the school has not provided another therapist in her absence. Any situation where the IEP is not being fully implemented as written is a good candidate for a State Complaint. The State DOE will not get involved in matters regarding differences in opinion between parties. The role of the State DOE is to make sure schools comply with Article 7. The complaint process is simple and free. https://www.in.gov/doe/students/special-education/ special-education-complaint-511-iac-7-45-1/
DUE PROCESS: Due process is similar to a court, but instead of having a judge and jury, the State DOE assigns a Hearing Officer to hear the case and render a decision on the various matters in the due process filing. In my opinion, due process should always be the last resort when trying to resolve a conflict between families and schools. First, due process is expensive. I would never advise a family to go to due process without a special education attorney. It is possible for families to recover attorney’s fees IF the family prevails (wins) on the issues. Second, for reasons that can be debated, it is somewhat difficult for families to win a due process case in Indiana. Special education attorneys I have worked with have always told me that if you are considering filing a due process case, you would be wise to make sure the
school has many “procedural violations” as part of the case. These are direct violations of Article 7…not matters regarding a difference of opinion. As an example, if a parent is fighting with a school over the need for a 1:1 aide for a student with autism, but the school has followed the current IEP to the letter, it could be more difficult for the family to prevail on just this one issue. Cases where a school has violated Article 7 in numerous ways and shown extreme indifference to the effective education of a student are cases that have a better chance of success in due process hearings. Of course, families should always consult a special education attorney when trying to make this decision since every situation is unique. Being a well-educated advocate for your child with special needs is the best way to avoid the need for dispute resolution from an outside source. Start by reading Article 7 and the school’s parents’ rights document given to you at every Case Conference. It is amazing to me how many parents have never done this. These two sources of information are not difficult to understand and are invaluable when navigating the world of special education. https://www.doe.in.gov/sites/default/files/specialed/ art-7-english-may-2019-update-index.pdf
Sheila A. Wolfe IEP Services, LLC sheilawolfe@sbcglobal.net
August 2021 • Special Needs Living
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pastor’s corner By Paul Hathcoat
ISP
If you are a parent or caregiver of someone who has been in a special education program within their local school system, then you know what an IEP (Individualized Education Plan) is. An IEP is designed to lay out education instruction, supports, and services a student needs in order to thrive in a school environment. I know, I am preaching to the choir here. But have you heard of an ISP (Individualized Spiritual Plan)?
An ISP is designed to plan out an individual’s spiritual formation and the progress that they and their parents/caregivers wish for them to achieve. The idea is simple. What is Johnny capable of? What does Jane know about our God already? How does Johnny receive information best? How can the local church help Jane to grow in her understanding of the Bible and the life, character, and nature of Christ? What type of plan can we create so that both Johnny and Jane systematically learn about all things related to their faith, based upon their function and ability levels? These questions and more are the driving forces behind creating an ISP for each and every Christian out there living with a disability that might otherwise be limited in their ability to learn and grow within a church and faith community. Let’s take a look at some more examples to help you readers feel what an ISP can do, practically in a church classroom. Example 1: Johnny gets to feel, hear, and experience the love of Christ each week through songs, games, memory verses, and interactions with leaders, volunteers, and peers in his Bible study class. Johnny learns best by repeating. A short verse is read, “We love because He (Jesus) first loved us” 1 John 4:19. Johnny is encouraged to repeat the verse verbally. Johnny is encouraged to repeat the verse by writing it down on special invisible ink paper. Johnny gets to ride in a wheelchair around the room while he and the room volunteer sing the verse out loud. With the guidance of the ISP, Johnny is presented each week with information and experiences that are custom-made to his individual learning style and preference. This way, his retention, and subsequent growth are magnified, and his outcome is clearer and more measurable. Example 2: Jane is a visual learner. She retains information when what she hears is reinforced with what she can see. It has been uncovered
16 Special Needs Living • August 2021
(Individualized Spiritual Plan)
that she also stops processing when noise levels are above the common conversation tone. When Jane comes to church and enters the disability ministry spaces, she is greeted with noise-canceling headphones. The memory verse of the week is presented on bright pink cardstock, which is her favorite color. She is asked to trace the letters using scented markers, which she loves. Next, on a ministry iPad, a video reviewing the memory verse is played through her headphones and she follows along pointing to pre-printed pictures on a PECS board. Jane feels comforted and challenged by these and other strategies and supports. Real, measurable progress is attainable through ISP directives and goals. This kind of experience may seem desirable and is definitely needed in our churches. But how can you find this level of support for your child or loved one? ASK FOR IT! Approach your local pastor and ask them about their disability ministry. If there is not one, ask if you could connect them with me, or any of the dozens of congregations in Central Indiana that are successfully ministering to the disability population. Volunteer yourself, to run a brief training for the church staff on Special Needs ministry perhaps. If there is a disability ministry of some sort in place, ask them if an ISP approach is available to be created for your kiddo. These types of supports need to be in place and available in our modern churches. The Gospel is for everyone and is attainable no matter someone’s function or comprehension level. Jesus says, “go into all the world and preach the Good News to everyone” (my highlight) Mark 16:15. I thank you for continuing to read these articles and allowing me and others to support you in one way or another. I pray that each of you knows and feels the love of God this day! Blessings Paul Hathcoat | Special Needs Director White River Christian Church Email: phathcoat@wrcc.org Ph #: 317-840-5558 Do you have a thought, idea or information that you would like to see in this section in an upcoming issue? Email Paul Hathcoat – phathcoat@wrcc.org.
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17
Meet the
LUDINGTON-BARQUET FAMILY Mariana, Darren, Sofia, Jack
by Angelica N. Gray, MA, BCBA, LBA Photos by: Heather Gregg – 21 Vines Photography
Meet the Barquet Family
Mariana and Darren’s love story began in Mexico City in 2001. They moved to the US 16 years ago and relocated to Farmland 9 years ago. They lived in Virginia and then Miami where they welcomed their daughter Sophie in 2009. The Ludington-Barquets completed their family with the birth of their son Jack in Muncie, IN on 2012.
Jack was born profoundly deaf and with other developmental disabilities and when he transitioned to preschool, he needed the specialized services of an Oral Deaf Program to ensure his progress with his language, so the Ludington-Barquets relocated to the Indianapolis area when Jack was about 2 years old. His parents stated that time is of the essence when you have a little one that needs to develop spoken language due to the limited window of opportunity allowed by the neuroplasticity of a young brain.
18 Special Needs Living • August 2021
Mariana shared that she and Darren didn’t know if Jack would learn to listen and talk. He was bilaterally implanted with cochlear implants at the age of 14 months. Due to his low muscle tone, his physical development had been affected and they needed to work on many areas of need. The family found themselves working on a variety of skills all at the same time, with several different interventionists that supplied invaluable knowledge and support to them. Mariana recalls that time was ticking and Jack needed high intensity of services. He then started in a full-day program the day after his 3rd birthday and remained in that school for three and a half years. He received daily speech therapy in addition to PT and OT weekly services. Mariana exclaimed that “No one tells you the amount of hard work that a kid with special needs will need!” She said that the family started to “look
is always “what works for your child is what makes the choice right. No one knows your child better than you as a parent.”
at the prices at the pump a little more carefully once you start driving everywhere for medical appointments and therapies!” Through the years of therapy, Jack surprised them each day and defied so many obstacles. Mariana and Darren were not quite sure if Jack would be able to walk independently. This skill took a while for Jack to master because his balance is deeply affected as is his hearing due to both senses being housed within the internal ear structure. Mariana recalls the day that Jack got on a bicycle and started pedaling, and took off. And he never stopped pedaling after that day! Jack, now age 9, has made so much progress and now attends mainstream school in the gifted and talented program and has scores in the 99th percentile for language! Jack and his sister, Sofia, attend Towne Meadow Elementary School in Carmel, IN. The Ludington-Barquets recall the long days and long nights of uncertainty and are grateful for those who gave encouragement and advice. This advice came from one of Jack’s aunt that is an elementary school teacher who said, “any kid will succeed when the parents are truly involved in his life.” With that advice, Mariana wants families to know that it’s important to be involved, to be present, to be open to learning every day, and to be an example for your child. The Ludington-Barquets are grateful for Jack’s team of providers at Peyton Manning Children’s Hospital, TheraPlay, St. Joseph’s School for the Deaf Special Education team at Carmel Clay School district. Mariana works as an Educational Advocate and Parent-to-Parent support for Indiana Hands & Voices, a not-for-profit organization led by parents of children that are deaf and hard of hearing (DHH). The organization’s goal is to support parents through their journey of raising a child who is DHH without a bias around communication modes or methodology. Her advice to parents
The Ludington-Barquets believe that access is the biggest limitation for a deaf child. They believe that access to information, education, and meaningful interactions with peers is what makes a difference. Jack’s parents have made providing equal access a priority for him in both school and community activities. Mrs. Ludington-Barquet additionally believes that parental involvement is extremely important and has been involved as a volunteer with her children’s school for the past six years. She believes
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that involvement allows you to support the school, support the team that is supporting your child, and gives your child the opportunity to see your support and involvement. Jack currently enjoys weekly swimming and gymnastics in addition to hippotherapy and private speech. Jack and Sofia both enjoy reading, and for Jack, it’s his quiet time and gives him the ability to rest from the high demands of the hearing world, which is crucial for a deaf child with hearing technology. Reading is Jack’s escape and his strength. Jack loves collecting antique comics. The family intentionally limits screen time in order to promote opportunities to develop language and literacy. And, oh, boy, has it worked! Jack loves visiting antique stores and talking to anyone about the golden age of comics, finding comic book treasures, and reading them all day long. Jack has an FM system which is made up of a transmitter (that his parents typically wear) and receivers that connect to his cochlear implants. This system allows Jack to hear his parent’s voices directly in his implants with clarity. When they go to noisy restaurants, children’s museum, or other activities that will allow for him to run with more freedom, the family brings their FM system so that he can always hear their voice if they need to call him or make sure he is aware of any danger around him. An FM system can reach up to 80 feet in distance. Mariana says that one of their biggest challenges is safety due to Jack being deaf. He has to work hard to listen to everything going around him and it can be exhausting for him. The Ludington-Barquets are a bicultural family and believe that their kids truly get the best of both worlds! They celebrate Christmas Eve and the Three Wise Man as those are the main celebrations in Mexico, but they also expect Santa Claus to show up on December
20 Special Needs Living • August 2021
25! The Ludington-Barquets celebrate Dia de Muertos every November and remember their family back in Mexico. As a family, the Ludington-Barquets love traveling and one of their favorite destinations is Cancun! They go every year and enjoy the beach, the food, and “the warmth of the people that welcome us back each year!” Mariana says that Mexico is “home for me.” Sofia and Jack truly enjoy going to Mexico to visit the pyramids and learning about the ancient cultures. The Ludington-Barquets love experiencing new foods and learning other languages. Darren attended the University of Pittsburgh and the Steelers are their favorite sports team! When it comes to music, the family loves the Beatles and Jack loves to show off his dance moves. Sofia, on the other hand, doesn’t enjoy dancing, but they all love watching Jack move to his favorite dance tunes! Mariana shares that she has lived in a different country and in different States within the U.S. She truly finds the community in Indiana as one of the most welcoming and understanding. The special needs community here is amazingly supportive and inclusive. To families who are new to the world of special needs, she would tell you “welcome” and that “being deaf doesn’t mean anything else but that you cannot hear. Deaf children are just children that need equal access to develop and become members of society. Deaf people communicate in a variety of ways, all of them beautiful and functional.” Thank you, Darren, Mariana, Sofia, and Jack, for sharing your inspirational and encouraging story with us. If you would like to share your personal or family story or to nominate someone else to be in an upcoming issue of Special Needs Living, email us at SpecialNeedsLivingIndy@n2pub.com.
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August 2021 • Special Needs Living
21
MEET THE
By Maria Smietana Photos by Heather Gregg – 21 Vines Photography
Davis Family Andrea, Mike and Lacey
Like all new parents, Andrea and Mike Davis were full of hope when they started their family. The two Indianapolis residents had met several years earlier at Primo Banquet Hall when the popular southside venue had Sunday night singles dances. Mike had attended IUPUI and Andrea graduated from ITT Business Institute. They married and led a frugal, low-key life, enjoying flea markets, coin shows, and going out for pizza on weekends.
The Davises brought their daughter Lacey home from Saratov, Russia, when she was only 1-year-old. Lacey appeared to have quite a sense of humor at an early age. When she started talking, Andrea has a sweet memory of her whispering what appeared to be a joke into her dad’s ear, and then bursting into giggles. Lacey is now a 16-year-old high school junior and most memories in the intervening years haven’t been nearly so sunny. “Adopting Lacey was one of the best moments of our lives,” Andrea said, “but at the time we adopted her, we did not realize that she was a special needs child.” Andrea remembers that Lacey was extremely hyperactive during her toddler years, with a non-stop, bouncing-off-the-walls kind of energy. But the first hints that something more serious was going on emerged as Lacey entered school. She naturally had an incredibly difficult time sitting still and paying attention during class, but her teachers also started to see increasingly troublesome incidents between Lacey and her classmates. Unlike most kids, she resorted to hitting and kicking when she didn’t get her way. That was a real red flag for Andrea. Our first visit to Riley Hospital was an entire day, in which she was evaluated by five
22 Special Needs Living • August 2021
different Drs. there and had been given the diagnosis of ADHD. From there began a years-long journey of visits back to Riley. Andrea wanted to continue therapy and behavior modification techniques rather than resorting to medication to deal with her daughter’s anger and excessive energy. “We were given things to try at home, like a reward board, where she could earn points for good behavior, leading to a reward at the end of the week,” Andrea recalled. Unfortunately, those approaches worked for less than a year.
So it was back to Riley, where the family was connected to Heike M. Minnick, Psy.D., HSPP, who had worked with internationally adopted children. “Dr. Minnick did get Lacey to open up some, so we saw that as a positive sign,” Andrea said. Lacey was also diagnosed with Asperger’s syndrome around that time. With each passing year, Lacey exhibited new troublesome behaviors. She started to lie and steal at 8, and at 9, oppositional defiant disorder (ODD), which occurs in about 40% of children with ADHD, was added to her growing list of diagnoses. Regular sessions at Adult and Child Therapy Centers became part of the family’s routine. Lacey’s doctors started her on Concerta, but it caused her to lose weight, so she couldn’t stay on it. Over the years, she has been on several medications, including Ritalin and Vyvanse (for ADHD), Zoloft (an antidepressant), and Lamictal (a mood stabilizer). Around age 10, Lacey started to make violent threats toward her mom. “While I couldn’t help feeling some fear, I really never
Over time, keeping Lacey safe and looking for new ways to help her had become a non-stop battle for the Davises, especially for Andrea. “She’s always in that flight, freeze, or fight mode, and dealing with the arguments is constant. She’s not only impulsive, but very stubborn, and her anger level is literally off the charts. The stress gets to be overwhelming.”
thought she would act on her threats,” Andrea recalled. But three years later, she did, punching her mom in the face. It was a bitter turning point, earning Lacey her first interaction with the police and a four-month stay at Gibault Children’s Services in Terre Haute. In 2018, Lacey was retested for autism and her earlier diagnosis of Asperger’s was confirmed. Her case also got a bit of a breakthrough when the family was referred to Indiana Brain Mapping in Carmel. Using a technique called quantitative electroencephalography (qEEG), it was determined that Lacey had been exposed to alcohol before birth. Although she did not have fullblown fetal alcohol syndrome (FAS), the finding did provide a partial explanation for her constellation of behavioral problems. Children with FAS tend to exhibit poor judgment and reasoning skills and are often hyperactive as well. Additionally, maternal substance abuse of any kind during pregnancy is widely documented to be a cause of ODD. “Every parent fears that when they have a child with behavior problems that they’re somehow a bad parent,” Andrea said, so she gained some comfort from learning more about what happened to Lacey before she was born. For Lacey, handling new knowledge about herself was more complicated. “I’ve never hidden anything from Lacey about her past,” Andrea said. “She’s known for a long time that she’s adopted, and we want her to know about her heritage. She was fine with it when she was younger, but it bothers her more now.” As is usual in international adoptions, very little is known about the birth parents. “We do know that her mom just walked away and left her in the hospital after birth, and the conditions in the orphanage were awful.” When Lacey entered her teen years, she wanted more freedom, and despite her track record, Andrea and Mike were willing to give her more space for a short time. “She had always said I’m too controlling, so we let her try to be a normal teen,” Andrea said. The results were sadly predictable — she started partying and doing drugs. While Lacey won’t trust adults, the opposite is true when she’s around her peers. “She’s very gullible, and wants acceptance from kids her own age,” Andrea explained. “She likes to think that everyone is her friend. It gets her drawn into the wrong crowds.”
Not surprisingly, Andrea admits there was a time when she was ready to throw in the towel. Between working full time (she takes care of accounts receivable for Dunham Rubber and Belting Corp. while Mike works for Community Health Network), caring for Lacey, and trying to maintain her own mental health, she was almost ready to give her daughter up. “I prayed for a sign,” she said, “and realized that I need to be there to be her voice and her advocate. Deep down, I do think she loves us and needs to know that we won’t give up on her.” Of the many support services that the Davis’s worked with, it was the Children’s Bureau that helped Andrea the most. “We attended a monthly support group there with families going through similar issues, she said. “Our families have always been supportive, but it’s better to be able to talk to people who have been through the same thing we have.” Andrea also underwent therapy on her own. “I have to admit that I have some resentment toward Lacey. She has put us and other relatives at risk with her behavior, and that was hard to process on my own.”
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Through all the struggles, Andrea and Mike have tried to maintain as much of a sense of normalcy in their home life as they can manage. They adopted two cats whom they dearly love. In calmer moments, they took Lacey roller and ice skating, two activities she enjoyed. There were even occasional trips to Gatlinburg. In the last three years, Lacey has been returned to residential psychiatric care three times. It’s the only way to keep her safe when she becomes a danger to herself and others. With their private insurance exhausted, and with recommendations and guidance from Lacey’s therapists, Andrea and Mike resorted to involving the Department of Child Services (DCS). Lacey had to be made a ward of the state, which troubled Andrea deeply. She was classified as a “child in need of services (CHINS)” under state law, and through DCS, she was placed at Crossroads. When she returned home in April of 2020 after her second stay at Crossroads, the plan was for her to resume her life while she and her parents underwent family therapy. But it wasn’t long, Andrea said, that Lacey reverted back to old behaviors, like making threats and destroying
property when she was angry. Despite all her mental health issues, Lacey has a high IQ, and that means she’s sometimes smart enough to fake her way through therapy. “It was clear,” Andrea said, “that she had manipulated her way through her whole stay at Crossroads.” Lacey was returned to residential care last September, this time to the Crisis Center in Gary, IN. “It was a very tough decision for Mike and me to make, but she was just not ready to be back home,” Andrea said. They are allowed to visit her periodically, and she is on medications (melatonin and aripiprazole) that seem to be helping. Lately, she has done well enough to earn passes for brief home visits. “Although her manipulation was strong in the past, Mike and I feel that she is starting to make progress,” Andrea said. “It’s still going to be a long road for us and her, but we think she’s finally realizing that she needs to work on herself to get better and we will be there for her when she’s ready to do family therapy.” As other parents of special needs children can relate to so well, especially parents of a child who acts out in public, Andrea still finds it hard to overcome the judgment that seems to come from all directions. If there’s one message that she wants to get out to the world, it’s this: “Don’t judge me. Until you’ve walked in my shoes, you have no idea what my family and I are going through.” If you would like to share your personal or family story or to nominate someone else to be in an upcoming issue of Special Needs Living, email us at SpecialNeedsLivingIndy@n2pub.com.
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August 2021 • Special Needs Living
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26 Special Needs Living • August 2021
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living with spinal muscular atrophy
MEET
By Christina McGairk
GRAHAM AND RILEY
Two Families Share Their Story
Spinal muscular atrophy is a variety of neurodegenerative disease that affects a person’s ability to control their muscle movement because of nerve cell loss in the spinal cord and brain stem. Spinal muscular atrophy, also known as SMA, causes muscle wasting and weakness, which makes it hard for a person with SMA to stand, walk, control their head movements, and sometimes difficulty with breathing and swallowing. According to the SMA Foundation, spinal muscular atrophy affects 10,000– 25,000 children and adults in the United States. It’s also estimated that at least 6 million Americans are SMA gene carriers. There are 5 types of SMA – Type 0, Type 1, Type 2, Type 3, and Type 4. Type 0 is a very rare type of SMA. The symptoms for this severe type include poor fetal movement a few weeks before birth, followed by severe weakness, and difficulty in breathing, feeding, and swallowing after birth. Babies who have this SMA type have a low survival rate. Type 1, also called infantile onset or Werding-Hoffman disease, is the most common form and is usually detected between birth to 6 months. Babies with this type experience muscle weakness, trouble swallowing, coughing, and breathing distress. Some may also need a feeding tube. Type 2, is diagnosed between the ages of 6–12 months. Symptoms for this type
include progressive muscle weakness and delayed or missed milestones. Type 3, also known as Kugelberg-Welander disease or juvenile SMA, is diag-
nosed between 18 months and three years, or even in one’s teenage years. Patients with this type have poor balance and may have difficulty standing from a lying or seated position due to muscle wasting. Type 4, like Type 0, is also very rare, but not as severe. This type mildly affects
a person’s motor mobility. It can be diagnosed at 18 years of age, but the diagnosis usually comes at age 35 or above. Adrienne Vollmer and her husband Nick recognized something wasn’t right with their son Graham at about 4 weeks old. “He was a weak baby, unable to move his legs or arms, and unable to nurse,” said Vollmer. The doctors didn’t seem too concerned, but when their precious son started having breathing difficulties, the Westfield couple sprung into action and took him to Riley Hospital for Children to see a specialist. After seeing a pediatrician, physical therapist, and pulmonologist, little Graham was referred to neurology for further testing. That’s when he received his official diagnosis of Type 1 Spinal Muscular Atrophy at 8 weeks old. The odds of surviving SMA Type 1 were very slim at the time. Unfortunately, there weren’t any treatments or cures for SMA at the time. Graham wasn’t expected to live past his 2nd birthday. “We were told to take him home and love him,” said Vollmer.
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Nick, Adrienne, Ben(11), Graham(6) and Lucy(9)
Graham, now 6 years old, has defied all the odds. He was a part of a clinical trial at a children’s hospital in Chicago where he received the treatment drug called nusinersen. Two years after Graham’s initial trial, the drug name was given the tradename Spinraza after meeting FDA approval. “The drug is given via lumbar puncture where they draw out spinal fluid and replace it with 5ml of the drug and is repeated every 4 months,” said Vollmer. The wife and mother of 3 also said the treatment helps the body to create more backup motor neurons, which slows down or even reverses muscle loss in SMA patients. “While it was an expensive price tag, we believe this drug saved Graham’s life.” Riley Smith, a 19-yearold Indianapolis native, was also diagnosed with SMA Type 1, but on her 1st birthday. Like Graham’s parents, her Mom noticed a few signs that something wasn’t right with her child. “When I was a baby, I didn’t scream as loud as the other Riley babies,” said Smith. “She also noticed that my hip flexor movements had decreased after a few months.” Smith also tried the SMA treatment drug Spinraza, but due to her severe scoliosis and rods in her back, it was extremely painful. “During the 2nd dose, the doctors were unable to give me the entire dose. So they decided I was unable to take Spinraza.” Now she takes a new treatment called Evrysdi once a day by mouth. The medication was approved by the FDA in August 2020. According to the drug manufacturer website, Evrysdi is supposed to help make and maintain survival motor neuron protein, which allows the nerves and muscles to work properly.
Although these medications help both Graham and Riley navigate through life a little bit easier, they still need help with the physical aspects of their daily lives. Graham still needs assistance transferring between chairs and moving in and out of bed. He is also fed through a g-tube and requires airway clearance and respiratory treatments to make sure his lungs are clear. Riley has several health issues due to her SMA. She can’t move her hands to type and her voice is hard for people to understand. Yet, with the use of mobility aids and specialized devices, both Graham and Riley are still able to do some things independently. “In his power chair, he’s showing more independence as his head and neck control continues to improve and arm movement as well,” said Vollmer. Riley uses a Tobii Dynavox device, which generates speech through eye movement. She can also use the device to control her phone or computer with her eyes. “I am about to get a new power chair that I can control with my eyes,” Even though both their lives are affected by SMA, there is no doubt that the love and support they receive from their family also carries them through. Riley has her mom, younger sister, and a wonderful nurse who helps her during the weekday. Graham has his parents and two older siblings, Ben (11) and Lucy (9). Both Riley and Graham’s family are actively involved in Cure SMA, an organization that spreads awareness about spinal muscular atrophy, helps fund research on the disease, and provides support for families of individuals affected by SMA.
Vollmer, who is also Cure SMA’s Indiana Chapter leader, spearheaded the effort to make SMA screening a requirement for all newborn babies in the state of Indiana. “We worked closely with our state representative and we were able to advocate at the statehouse and get “Graham’s Bill” passed, which requires screening of every newborn baby in the state of Indiana,” said Vollmer. “With early diagnosis and intervention, the path of the disease is distinctly altered and these children can live a next to normal life with little to no physical symptoms of SMA.” Vollmer and her husband Nick knew they wanted to use their son’s story to educate and give back to the community. So they started an annual fundraiser event in 2017 in honor of Graham “The Cure SMA Walk for Graham brings about 800 local Westfield and surrounding area people, and is a great family-friendly event to help us spread awareness,” said Vollmer. “We have been able to bring in on average $100K per year.” The walk went virtual due to COVID in 2020 but will be held this year at Coxhall Gardens in Carmel on Friday, August 20. To learn more about SMA and about the Walk for Graham, please visit www.curesmal.org
If you would like to share your personal or family story or to nominate someone else to be in an upcoming issue of Special Needs Living, email us at SpecialNeedsLivingIndy@n2pub.com.
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32 Special Needs Living • August 2021
By Christina McGairk
Gluten-Free Lunch Ideas When TiTi’s autism care specialist suggested she go gluten-free back in 2018, it was a month before school started back. I saw that eating gluten-free did help my daughter so I wanted to stick with it, but it left me to wonder what the heck I was going to pack for her school lunch. Did her school even offer gluten-free lunch options?
I notified TiTi’s teacher, the cafeteria manager, and the school nurse about her gluten sensitivity to see what we could work out. That’s when I learned about the 504 plan. The 504 plan comes from Section 504 Section of the Rehabilitation Act of 1973, which was created to prevent discrimination against students with disabilities in public schools from K-12. Once I found out that, I gave the school a letter from TiTi’s autism care doctor explaining her gluten sensitivity, the year she was diagnosed, the amount of time she’s been gluten-free, and her developmental needs. After that was established, the cafeteria manager gave me a list of gluten-free lunch options for each week. Most of it consisted of gluten-free chicken nuggets, gluten-free pasta, or a ham and cheese or turkey and bacon sandwich on gluten-free bread. There were some items on the gluten-free list that I knew TiTi wouldn’t eat. So on those days, I packed her lunch.
Packing a gluten-free lunch wasn’t as hard as I thought. Yes, you have to put some thought into it, but it isn’t a daunting task.
Here’s a list of gluten-free lunches I made for TiTi when she didn’t receive school-provided lunch. I usually served these lunches with TiTi’s favorites like grapes, strawberries, blueberries, mandarin oranges, gluten-free pretzels, or gluten-free potato chips.
Broccoli Cheese Melt Ingredients:
• • • •
4 slices of gluten-free bread 8 slices of swiss cheese 1 bag of frozen broccolini 6 ounces of gluten-free grilled chicken strips
Directions:
Black Bean Colby Jack Cheese Quesadilla
• Lightly toast bread • Cook frozen broccolini according to package • Layer bread with cheese, chicken strips, broccolini, swiss cheese, and top it with the other bread slice. • Press the slices together and microwave for 25 seconds
Ingredients:
Tuna Lettuce wrap
• • • •
1 gluten-free 8-inch tortilla ½ cup smashed black beans 2 slices of Colby jack cheese Black bean and corn salsa
Directions: • Warm corn tortilla over medium heat in a medium-sized skillet. • Place one slice of Colby jack cheese on half of the tortilla. • Apply a layer of smashed black beans on top of the cheese. • Place remaining cheese on top of the beans • Fold the tortilla and warm each side until golden brown or cheese melts.
Ingredients: • • • • •
2 cans of tuna packed in water 2 green onions thinly sliced ½ diced apple 4 Bibb lettuce leaves Gluten-free poppy seed dressing
Directions: • Mix apple, tuna, and gluten-free poppy seed dressing in a bowl. • Scoop mixture into Bibb lettuce leaves. ***Disclaimer: I’m not a nutritionist or a doctor. I’m just a loving Mama supporting her daughter and others through their gluten free journey. If you have questions about the gluten free diet or celiac disease, please contact your medical professional. Thank you.*** If you would like to share gluten-free tips, tricks, info, etc. in an upcoming issue of Special Needs Living, email us at SpecialNeedsLivingIndy@n2pub.com.
August 2021 • Special Needs Living
33
non-profit spotlight
AGAPE By Lisa M. Monge MSN, RN
THERAPEUTIC RIDING
Agape Therapeutic Riding was founded in 1986 by a mother and daughter team who combined their love for horses and children to develop a summer riding program for children with disabilities. By 1994, Agape was full-time and year-round, providing therapeutic riding, equine-assisted learning, summer camps, and mobile visits. Agape originated in Cicero, IN, and has expanded to a second campus in Greenfield, IN. Accreditation
Agape is premier-accredited by the Professional Association of Therapeutic Horsemanship International (PATH). PATH premier accreditation ensures that an equine therapy center adheres to the highest standards of safety and professionalism in the field. This amazing organization serves individuals from age 4 and up and offers clients the ability to design a curriculum specific to a community, a school group, or an individual. Individual Adaptive Services
Although Agape Therapeutic Riding serves individuals with a wide range of disabilities, the most common (but not limited to) include: autism spectrum disorder, attention deficit (hyperactivity) disorder, reactive attachment disorder, cerebral palsy, post-traumatic stress disorder, anxiety and depression, oppositional defiant disorder, ambulatory/orthopedic challenges and Down syndrome.
34 Special Needs Living • August 2021
Adaptive services for any individual are based on physical, cognitive, emotional, social, spiritual and character development. Initially, the participant will focus on four goals, discussed with the campus manager and PATH certified instructor. Examples of a goal from each category include: normalization of muscle tone (physical), visual and auditory discrimination (cognitive), hopefulness (emotional), interpersonal relationships (social), connections with nature (spiritual), and/or self-control (character development). Riders gain strength in their core, better communication skills, reduced anxiety, more confidence, and the list goes on and on. Ultimately, Agape Therapeutic Riding hopes to reduce challenges for special needs families and help them find hope, healing and growth for their child by connecting with a horse. Groups, Veterans, and Memory Lane
For everyone at Agape, lessons are facilitated by PATH certified instructors dedicated to inspiring emotional, cognitive, social, and physical growth through interactive and engaging activities with horses. A curriculum may be designed for community and/or school groups as an interventional approach for individual alcohol
and substance use disorder or increased knowledge of safe relationships, bullying, suicide prevention, or awareness of abuse and neglect. Social, emotional, and cognitive areas of growth can also be addressed through one of the customized curriculums, such as: Mindfulness, How to be Awesome, Thinking Outside the Box, Unbridled Leadership, and/or Job Skills. Veterans are also encouraged to reach out! There is a specific program for the unique challenges they may be living with. Memory lane is for aging adults focusing on improved cognitive skills, socialization, confidence, mobility and strength. This program is designed specifically for individuals with Alzheimer’s disease and other dementias, autism spectrum disorder, multiple sclerosis, Parkinson’s disease and other physical or mental challenges. Some groups or organizations that may benefit from this service include adult day centers, community centers, senior care facilities, health and rehab facilities and churches. Community Involvement and Support
Agape could NOT operate without the 200+ volunteers that help riders each week. Additional volunteers are always needed around the barn. Agape also relies heavily on the generosity of individuals, companies, and communities to close the financial gap between what it costs for an individual to ride and the real costs to the organization. Philanthropy and gifts allow Agape Therapeutic Riding to continue to serve families with financial hardship through a rider scholarship fund. Unfortunately, Agape is only private pay, which means waivers or insurance do not cover services.
Jennifer introducing Brody to Beau Within minutes, Brody boy felt calm enough to give Beau some sweet kisses. BE STILL MY HEART.
Jennifer teaching Brody to groom Beau
Bean and Moya
“Sorry Ma’am, He’s too Autistic” into “No Apologies Necessary” Brody, 8 years old, autism spectrum disorder
Point of Contact for Service and/or Community Donation
For individuals and families interested in service depending on location: Cicero, IN: Elizabeth Gorveatte @ northsitemanager@agaperiding.org Greenfield, IN: Jennifer Wright, eastsitemanager@agaperiding.org Social Media:
Website www.agaperiding.org Facebook page:
https://www.facebook.com/agaperiding Instagram: https://www.instagram.com/agaperiding/ Community Donation:
Please visit “The Agape Wish List” at https://agaperiding.org/give/. If you are able to donate, FIRST contact Agape Therapeutic Riding about the items listed. The contact number for donating is (317) 773 7433. Testimonials: Parental Worries into Tears of Joy Eli, 28 years old, cerebral palsy Eli was 28 years old when his father visited Agape to learn about therapeutic riding sessions for his son — but Dad was still hesitant after meeting with Agape staff. Eli struggled with cerebral palsy and other therapies just hadn’t worked for him. He had ridden horses in the past and the family hoped that horses might improve his declining physical and emotional well-being. Before lessons at Agape could start, Eli suffered a serious health setback, spending six months in and out of hospitals, at times fighting for his life. But Dad and Agape stayed in touch, looking to the future. When Eli was healthy, a riding lesson was scheduled. On the appointed day, Eli arrived at Agape East accompanied by both Dad and Mom, who watched the lesson with a mix of excitement and caution. When Eli gave his horse, Duke, a gentle tap and the two started working together like they’d been partners for years, parental worries turned into tears of joy. Eli had found a new friend in Duke and a new place to belong in Agape — and despite serious health challenges, a family had found hope for the future.
Brody is one of two siblings from the same family with autism spectrum disorder. He loves horses very much. But because of the negative behaviors that come along with his diagnosis, taking him to places like Brown County or a fair to ride a horse is not an option. I have been searching for a place for him to be close to horses. My thought was if it is the only time during the week he is truly at peace, there would be no cost this single momma would not pay. Prior to the COVID-19 pandemic, Brody was evaluated by two different facilities and denied by both. One manager told me, “I am sorry, Ma’am, he’s too autistic.” Pain, hurt, frustration…anyone who loves someone with a disability understands the helpless feeling of your child being denied because of a diagnosis they did not ask for. Those feelings and emotions changed! A co-worker posted a picture of her on Facebook with horses and mentioned her mom worked at a place years ago… it was AGAPE! With anxiety and a little pit in my stomach, I got the information from Tiara and reached out. I sent an email explaining….”I’m trying to get my autistic son some riding lessons. Not even lessons but I just want him to be able to ride a horse. He loves them but because of his disability and difficulty transitioning we are unable to just take him to normal places like Brown County. I took him to another place about a year and a half ago but they said he was too autistic…” We visited the Greenfield campus. It was beautiful. It looked like a puzzle. The manager, Jennifer, was warm, caring, understanding and offered a lot of reassurance for my anxiety. We toured and asked a lot of questions. As expected, leaving the facility was my reality (VERY difficult transition to the vehicle for my son) requiring both my nanny and me. I am not writing about this experience to portray my son in any negative way, but to mention the nurturing feedback from Agape Therapeutic Riding. Jennifer worked with me to tailor a transition plan for when Brody starts next week (transitioning from the horse to leaving). She also helped me choose four initial goals that will be closely monitored and are very flexible. I am cautiously optimistic! Thank you, Jennifer; I know it will take A LOT of time, but I am confident we will get Brody in the right direction. Most importantly, I am CONFIDENT a caring team is behind my son. ***YES, Jennifer at AGAPE saw my son Brody! She did NOT see a disability! Do you run a non-profit? Would you like to be a part of the non-profit spotlight or nominate someone else to be in an upcoming issue of Special Needs Living? Email us at SpecialNeedsLivingIndy@n2pub.com.
August 2021 • Special Needs Living
35
Aaron Olson – Writer and Contributor
“marvelous margaux”
meet
Liz, Justun, and Margaux A blended family - Liz is a stepparent & advocate for Margaux
Liz and Justun live in the Little Flower neighborhood, located on the near-east side of Indianapolis, with their daughter Margaux, four cats, and their dog, Lisa Marie. Justun and Liz are both teachers by trade and met while teaching at the same school. Margaux is Justun’s daughter from a prior relationship, but it wasn’t long before she developed a tight bond with Liz, who recently stepped away from teaching to help with her care. Liz, in addition to helping with Margaux’s care, writes a children’s book series called “Marvelous Margaux.” The book series is based on Margaux’s experiences and the challenges faced by children who have similar disorders. The book series makes no profit and any money made is put directly into creating more books. “My plan is to create a series that includes all therapies, doctor appointments, and other rare diseases to promote awareness,” Liz said. Needs Living • August 2021 36 Special
Margaux was born with Dup 15q syndrome, a genetic condition in which chromosomes 15q11.2-q13.1 are duplicated. The disease manifests itself primarily as a neurodevelopmental disorder that is often accompanied by autism spectrum disorder, epilepsy, and intellectual disability. It is the most common cause of genetic autism. Though autism through this disorder generally presents with the usual set of symptoms, people with Dup 15q syndrome are more likely to have motor impairment and impairment of daily living skills while having a lower severity of autism as measured by the Autism Diagnostic Observation Schedule (ADOS). Generally speaking, this means that people with this type of disorder may display a higher degree of social function. There is a great deal of care dedicated to Margaux’s needs. Initially, Margaux struggled with potty
training, sleeping at night, and dressing and feeding herself. Over the years and with a lot of help from Liz, Margaux has started to overcome some of these hurdles. This year Margaux has joined a T-ball league at a church and Liz decided to coach the team. Margaux’s therapy schedule is extensive. In addition to standard ABA therapy, Margaux also receives recreational therapy, feeding therapy, music therapy, and occupational therapy. (Notes from Liz: "Margaux still is not perfect with potty training, sleeping, and such. She has had help from me and improved greatly, but also with help from her therapists and doctors as well. I am very regimented and provide a strict routine, which helps her thrive. I really enjoy working on her socialization as therapies have tended for M to gravitate to adults instead. This is why we have signed up for sports (tball), and summer camps for neurotypical kiddos and I attend/coach as her 1:1. aide.")
Both Justun and Liz are becoming more involved in the special needs community and welcome the opportunity to get together with others to share stories! Liz is currently a parent volunteer for ASK, a planning committee member for Noble’s Raising the Stakes event, and a chair for their church’s summer festival. She recently applied to be a board member of the Little Flower Neighborhood Association and the national Dup15Q Alliance board. Additionally, Liz is currently applying to become a notfor-profit called “Marvelous Margaux” (same name as her book series) that provides free parent advocacy and evaluates business establishments for sensory friendliness.
If you would like to share your personal or family story or to nominate someone else to be in an upcoming issue of Special Needs Living, email us at SpecialNeedsLivingIndy@n2pub.com.
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37
pioneer parents in indiana By Angela Arlington
was discharged, a doctor asked her, “Where do you want to see him in 20 years?” This gave hope to Donna, especially after her daughter was also diagnosed with CF. CFF did sponsor an annual family education conference. “Eventually, I worked with CFF to plan and organize a family education conference that grew from 150 participants to over 350 during the four years that I worked on the conference. It was a huge success and provided parents, professionals, and patients with an opportunity to learn and share information. It was a great opportunity to learn how to work with professionals and develop programs that partnered with families and patients to develop effective parent education programs.”
meet
Donna Gore Olsen and Linda K. Hankins
Donna Gore Olsen
Donna Olsen’s oldest son was born in 1975. She and her family moved to Indianapolis in 1979, followed by the birth of her second son who was diagnosed with cystic fibrosis (CF) in June of that year. Her daughter was born two years later and was also diagnosed with CF.
“Our son was hospitalized in the Methodist Hospital Children’s Pavilion where I remember going to the telephone booth at the end of the hall and calling the Cystic Fibrosis Foundation (CFF). I requested that they send me whatever information they had. I still have that packet of information. The lady on the other end of the line was a parent of a child with CF and tried to reassure me at a time when the life expectancy of a child with CF was just fifteen. My brother-in-law who was a resident at the IU Medical School was a terrific resource of information. There were no support groups that I knew. The CFF was primarily for providing information and raising funds, not providing support.” When Jim
38 Special Needs Living • August 2021
After working on the family education conferences, a visiting nurse suggested Donna might be interested in attending a meeting of parents sponsored by the Association for the Care of Children’s Health and the Federal Bureau of Maternal and Child Health. “There were some funds for hotel and flight. The Breath of Life Guild gave me funds to attend the meeting in Houston. There in the mid-1980s, I met parents from all across the United States who were doing what I had only dreamed of doing – starting parent programs, state resource centers, and, changing federal and state laws. There were only about two dozen parents attending the meeting, but what a dynamic group! I came home with the hope of starting a program or connecting with existing programs.” There was one program in Indianapolis, but it became clear that there was turmoil and conflict. Donna decided to try another route and connected with the Indiana State Department of Education who linked her with the Parent Information and Advocacy Task Force of the Preschool Planning Grant. Linda Hankins, the mother of a son with Down syndrome, was chair of the committee. “Timing is everything, you can’t do anything alone.” “We soon realized that regardless of whether a child had a developmental disability or a serious chronic illness, the issues for their families were the same whether financial, emotional, or educational. The biggest issue was access to information in a timely manner. As a result of our involvement on the preschool planning grant, Linda and I worked together to bring a group of parents from all over the state of Indiana to meet with the Governor’s office to discuss the role of parents in the implementation of Public Law 99-457, the federal law that provided money to states to fund early intervention programs. Indiana’s program became known as Indiana First Steps. Eventually, Linda and I became employed by the program or through programs funded by First Steps.” Starting The Indiana Parent Information Network (IPIN) was a struggle at first. “We decided to reluctantly incorporate when we could not find another not-for-profit who was interested in developing an information and support program across disabilities. The final straw was when Indiana could not take advantage of a grant opportunity because none of the current not-for-profits
saw the value that Linda and I saw in developing a centralized information system. IPIN activities were funded by our spouses as well as friends and family who would donate printing or anything else we needed. We used an office in the basement of our home as the IPIN office to house the computer that I had won at the Houston conference.” At about the same time, the Indiana Governor’s Planning Council provided a training opportunity to learn how to write grants. “In 1989, we wrote our first grant, a federal grant proposal, that was approved but not funded. In the Spring of 1990, IPIN applied for a $25,000 First Steps grant to train parents to be members of the county early intervention councils. We got the grant, which allowed us to set up a separate telephone line and pay for parttime positions. Later that year, we learned that our proposal to the federal office of Maternal and Child Health would be funded at $125,000 a year for three years. It was at that point, that we decided to find an office outside of the home.” “In 1991, we helped to pass SB 30, which allowed for the waiving of parent income and resources for home and community-based Medicaid waivers. Later that same year, we received a second grant, to fund the training of childcare workers for inclusion of children with special needs in regular childcare programs.” After that, they received state and federal grants to develop the network and provide needed information and supports to both parents and professionals. Donna served as Executive Director of IPIN from 1987 until 2004. “Soon after, under new leadership, the decision was made to clarify to the community the mission of the organization by using a name that they felt better reflected their mission. I believe that the organization has maintained its commitment to families as a parent/family lead organization.” That was when IPIN became About Special Kids (ASK). “When I left, I was worried how the organization would fare. I have been very pleased with its growth and its leadership. My hope has always been to make life easier for families with children with special needs by providing them with information in a timely manner, encouraging them during their journey with their children, and ultimately helping children live up to their potential with the help of their parents and the professionals who care for them.” After leaving IPIN, Donna worked with two physicians at Riley (2005–2009) to start the Center for Youth and Adults with Conditions of Childhood (CYACC), which works with youth, adults and their families to prepare them to transition to adulthood. In 2009, she went to work in the Riley Newborn Intensive Care Unit (NICU) as part of the Family Support Program. “There, I worked primarily in the area of helping families access health benefits and understand their health coverage, commercial coverage or public, as well as employee benefits that can help them meet the needs of their children.” In 2014, she completed her master’s degree in public health (MPH). In October, 2019, Donna
retired from Riley. “More recently, I worked for four months as a Contact Tracer for the Indiana State Department of Health.” Both of Donna’s children are in their forties, have families, work full time, and enjoy relatively good health. They also know a lot about health insurance. “I believe their success is due to the families who I came to know and respect as well as what my children taught me about raising children with special health care needs. I also give a lot of credit to the professionals who were willing to partner with our family in meeting the needs of all of our children.” Reflecting on her life, “In the early years, it was difficult to get some professionals to see the value of partnering with families either in the care of their child or in the development of health policy. As time went on, I believe that IPIN gained the respect and appreciation of many people in the health and education community for our desire to be good partners but also for our commitment to children and their families. It is also important to remember that nothing important is accomplished alone. Credit should also be given to parents like Linda Hankins who was willing to also take the risks that were needed and had the talent and skills to help bring the dream to a reality. Also important were the parents who had the courage to work for an organization that lived from grant to grant when funding was uncertain. Credit must also be given to the professionals who were willing to support partnerships with parents, families, and organizations in a new way.”
A.C.E. Is Growing Exceptional Learners From The Ground Up! We recognize that every individual with Autism is unique in terms of his or her challenges and strengths. Whether you are a family who has just received an Autism diagnosis, you have an older child in the later stages of treatment, or anything in between, ACE will create an Applied Behavior Analysis (ABA) therapy program that will work for your child and your family. IN HOME & CLINIC-BASED SERVICES In-Network With Most Insurances
www.autismenrichment.com (317) 436-7080 | info@autismenrichment.com August 2021 • Special Needs Living
39
DYNAMIC MINDS ACADEMY sponsor of the month By Julie Gordon
A school worth fighting for Back in 2013, I developed a vision for a hybrid educational model to mitigate a growing crisis in the community. Parents with special needs children in the public schools were exhausted from fighting for services and accommodations. At the same time, families were forced to transition their kids out of ABA centers and into schools due to insurance cuts. Most of these students were not ready to take the huge step from 1:1 therapy to being in a classroom with 14 other kids. Those who presented more mildly were not getting critical therapy services for executive functioning, anxiety, and depression, while students with maladaptive behaviors were being suspended from school too frequently. Education is the expertise of schools, as it should be. But to educate those with medical, social, emotional, and behavioral needs, we are asking schools to stretch outside of their expertise into the clinical scope. It is two different worlds colliding, trying to make it work. It is individualizing education in a standardized system. On the other hand, behavioral therapy is the expertise of behavioral health providers, as it should be. But to provide intensive therapy to those who need to catch up academically, we are asking centers to stretch outside of their expertise into the educational scope, which is not reimbursable. A hybrid model that combined education and behavioral therapy only made sense. But would the model be successful? Would it be supported by the community? Would a charter school authorizer take a chance on it?
40 Special Needs Living • August 2021
Samantha Bandy, M.S. Ed, Education Director
Aaron Wallace, M.S. Ed, Associate Education Directior
LaMeca Perkins-Knight, M.S. Ed, Special Education Director
For a charter school to be authorized, it needs to be innovative. Dynamic Minds Academy’s mission met that criterion, as our model was the first of its kind in Indiana. We aimed to bridge the gap between education and therapy for students on the autism spectrum by providing evidence-based practices for personal growth within an optimal learning environment. Therapy and education under one roof, in one seamless day, increases continuity of care, continuity of instruction and offers an environment of belonging, challenge, and opportunity. The model proved successful for six years through partnerships with outside charter schools. But those schools had their missions, and we needed our own. Beginning in 2015, I attempted to get Dynamic Minds Academy (DMA) authorized and got my first rejection – due to size. A school with only 50 students was thought to be too small to be sustainable. Then, after ensuring parent support to allow school size to grow by 3x, knowing it would come with new challenges, we tried again. We now had a strong board of directors and advisors and a plan for growth to sustain a faculty and a location to maintain high-quality services. Two more times, the concept was rejected: “Too risky;” “Not enough funding;” “Why in the world would you want 150 students with autism in your school?” We understand that the school is not for every student or every family, but charter schools and least-restrictive environments are about choice, and for those who make the choice, it is “life-saving” as one parent calls it. Finally, in early 2019, Trine University’s Education One took a chance on us. DMA received a five-year charter. We would have our own mission, so not only could our students grow their own way, but our school could as well, with their guidance and support. Thrive, Not Just Survive Educating over 100 students with ASD is not difficult if you are doing it right and with the right team. I handed over the torch to an experienced and dedicated administration team to bring the mission to life. This administration, led by Samantha Bandy, Aaron Wallace, and La Meca Perkins-Knight, knows that half of the battle is a genuine belief in the students you are educating.
If you don’t believe they can do it and meet them where they are every day, your mission and your students will fail. Partial Day Therapy It isn’t that students with ASD aren’t able to keep up with the content; it’s that the environment in a typical school is overwhelming, the social dynamics are too nuanced, the pace demands are too high, and most often, their behavior is misunderstood. DMA believes that a student’s social and emotional well-being is as important, if not more so, as their grades. The real world demands communication, collaboration, flexibility, and problem-solving whether at work or in relationships. Therapeutic intervention decreases stress and increases confidence, leading to readiness for learning. Low Ratios Each classroom cohort is no more than 12 students, with a 3:1 student to teacher ratio for instruction. Classroom cohorts are based not only on academic level but on social, developmental, and cognitive strengths and challenges to ensure students have the optimal learning environment. Smaller ratios allow teachers to create smaller groups that are working at the same level on a particular subject and reduce the opportunity to be disengaged as they might during typical whole class lessons. Low Stimulation Students with ASD struggle with information processing and have more difficulty filtering out stimuli in the environment. Bright colors, pictures, and writing all over the walls and rugs create unnecessary “noise” to process. The classrooms were designed to limit over-stimulation that distracts students and takes away from learning. Smaller spaces are available for students who need a break and even less distraction. Year-Round Calendar The year-round calendar allows students to get 240 partial days of instruction to meet their goals at their pace. The other part of their day allows for therapeutic development. Long breaks create inconsistency as well as interfere with momentum during goal breakthroughs. While it is important for students to have breaks when they are “white knuckling” through school every day, our approach allows students to take breaks at their pace for their needs and removes the stress of holding it together for 180 days.
Or as one 16-year-old student put it, “Here, I can finally breathe.” Built-in Accommodations Individualized Education Plans (IEPs) in our school include all accommodations automatically. No need to request them; if they are needed, they will be given. Our philosophy is to meet every student where they are and provide the just-right challenge for the moment, day, week, month, or year. We all have bad days where we need to use other tools and resources to help us through. Our students deserve the same attuned attention to be set up for success every time they walk into the building. Support Services Speech, occupational, and physical therapy, mental health care, and behavior support are available to all students who meet the medical necessity criteria. Our therapy provider employs all clinicians, including specialty clinicians like music, recreational, and art therapists, who help enrich our students’ experiences. Highly Trained Teachers Most importantly, we hire passionate teachers who are ready to show up every day for their students and who believe in them and the mission of DMA. Teachers have intensive and ongoing training and support in behavior management and the overall approach to educating students with ASD effectively and with compassion. DMA employs teachers licensed in special education, general education, core content, and interventions to ensure that every student has the appropriate instructor to meet their academic needs. Balanced & Flexible Curriculum DMA utilizes the Universal Design for Learning Guidelines to help the teachers meet the Indiana State Standards while considering the unique learning needs of each student. Instruction is delivered using mediums such as standards-based
curriculums, project-based units, and targeted small group instruction. Each classroom is flexible on how much of each medium will be used based on its student make-up. This allows for diverse methods of meeting academic and IEP goals. Individualized Paths Students are guided on the path that is right for them and can change as their desires and skills change. Whether they’re college-bound, headed for post-secondary employment, or focused on attaining independent living, our hybrid model supports the development of critical life skills that are necessary for any path they choose. Students truly grow their own way. Doing what is best isn’t always the easiest or most cost-efficient, and often doesn’t fit in a standardized box. No one should have to fight for accommodations, opportunities, or understanding. We hope our mission is an inspiration to show how effectively slowing down and focusing on well-being can make all the difference in the academic success of students with ASD. Grow Your Own Way! If you have a child on the autism spectrum in grades K–12 that needs a model where they can thrive, not just survive; visit us online to fill out an inquiry, to schedule a tour, or to enroll for the 2021–2022 school year. Schedule a tour today! click this link or call (317) 578-0410 http://dynamicmindsacademy. org/enrollment/ Dynamic Minds Academy 8350 Craig Street Indianapolis, IN 46250 317-578-0410 ext 112 http://dynamicmindsacademy.org Tuition-Free Public Charter School
August 2021 • Special Needs Living
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Empowering Lives
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living
Special Needs
Indianapolis & Surrounding Areas
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Framing • Flooring • Roofing • Yard Cleaning • Decks • Interior and Exterior Painting • Privacy Fence • Build Ramps • Expanding Walls
