living
Special Needs
November 2021
Indianapolis & Surrounding Areas
TO GET THE DIGITAL COPY OF SNL THROUGH TEXT MESSAGE TEXT THE LETTERS SNL TO THE NUMBER 55433 INSIDE: • Special Needs Support Groups in Indiana • Meet the Norton Family • Non-Profit Spotlight: Victory Lane Camp • Meet the McCabe Family (Founder of Special Needs Living) • Sponsor Spotlight: Franco Landscaping • Meet the Bruinsma Family - Q22 Awareness Month • The ABS’s of IEP’s - The Difference Between Progress and Meaningful Progress • Pastor’s Corner - Rest and Respite • A Moment of Inspiration - This Isn’t the Grief Olympics • Special Needs Mom Becky Cash- Running for the Senate • Lessons Learned: Record Keeping • Local Events and More
ON THE COVER:
The Norton Family –
Jill, Greg, Liam and Luca Norton Photos by: Heather Gregg – 21 Vines Photography
CONNECTING - INSPIRING - EDUCATING - FAMILIES WITH SPECIAL NEEDS
2 Special Needs Living • November 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 November 2021 • Special Needs Living
3
INDEPENDENCE IS YOUR RIGHT
HOME ACCESSIBILITY AND MOBILITY EXPERTS FOR SALES, SERVICE AND INSTALLATION OF ACCESSIBILITY & MOBILITY EQUIPMENT, GIVE US A CALL TODAY!
WE NOW ACCEPT MEDICAID
We service most major brands! CYA Mobility | 570 E Tracy Rd. STE 660 | Whiteland, Indiana 46184 317-530-2541 | anthony@cyamobility.com | www.cyamobility.com Local, Woman-Owned Business 4 Special Needs Living • November 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
Family Voices Indiana www.fvindiana.org
800-545-7763
First Steps
317-232-0570
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
574-234-7101
1-800-772-1213
INSOURCE www.insource.org Indiana Department of Education: Office of Special Education www.doe.in.gov/specialed
SCAN TO VIEW THE PAST ISSUES OF SPECIAL NEEDS LIVING
SCAN TO GET THE DIGITAL COPY OF SNL THROUGH TEXT MESSAGE
DISCLAIMER: Any articles included in this publication and/or opinions expressed therein do not necessarily reflect the views of The N2 Company d/b/a N2 Publishing but remain solely those of the author(s). The paid advertisements contained within the Special Needs Living magazine are not endorsed or recommended by The N2 Company or the publisher. Therefore, neither The N2 Company nor the publisher may be held liable or responsible for business practices of these companies. NOTE: When community events take place, photographers may be present to take photos for that event and they may be used in this publication.
November 2021 • Special Needs Living
5
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 that helps those with special needs and would be a good resource for families please let us know. Jamie.McCabe@n2pub.com. If you run a business and would like to be involved or support this magazine you can set up a time to talk here https/calendly.com/jamie-mccabe/special-needs-living ABA & COMPREHENSIVE SERVICES K1ds Count Therapy (317) 520-4748
ATTORNEY Hostetter & Associates (317) 852-2422
Munder Financial James Munder (317) 238-6621
ABA SERVICES Adapt for Life ABA (317) 383-0188
ATTORNEY-WILLS/TRUSTS/ ESTATE PLANNING Law Office of Elizabeth A. Homes LLC (317) 660-5004
WestPoint Financial Group Gordon Homes (317) 567-2005
Applied Behavior Center for Autism (317) 849-5437 Autism Center for Enrichment (317) 436-7080 Mindful and Modern ABA Therapies (317) 827-7777 Piece by Piece Autism Center (765) 481-2261 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
CASE MANAGEMENT Connections Case Management (317) 440-0637 IPMG - Indiana Professional Management Group (866) 672-4764 CAT CARE & SITTING Bastet Cat Care & Sitting (317) 919-1948 CBD SUPPLIER Indy CBD Plus (317) 961-0191 CLEANING SERVICE Pristine Cleaning Service (317) 617-5572 COFFEE ROASTER Tinker Coffee Co. (317) 438-5728
ADULT DAY CENTER Adult Day Centers Jay Lugosch (317) 296-8815
DAY / BEHAVIORAL SERVICES Developmental Disabilities Systems INC. - DDSI (317) 477-8240
ADVOCACY/EVALUATIONS PEAS for Kids (920) 980-1172
DENTAL CARE Children’s Dental Center (317) 842-8453
ASSISTANCE DOG Indiana Canine Assistant Network, INC. (ICAN) (317) 250-6450
FINANCIAL Charter Advisory Corporation David Yearwood (317) 844-7416
6 Special Needs Living • November 2021
FUNCTIONAL MEDICINE Wholestic Nutrition (317) 429-0111 GYMNASTICS Body by GymRoots Studio (317) 579-9300 HEALTH & WELLNESS LifeVantage - Team Richards Kristin Richards (317) 698-5264 INDOOR TRAMPOLINE PARK Adrenaline Family Adventure Park (317) 572-2999 adrenalinefishers1.com INSURANCE State Farm John Cole (317) 430-1958 INVESTMENT MANAGEMENT Dan Claxton Investment Advisory & Broker Dan Claxton (317) 250-8080 LANDSCAPING/LAWN CARE/ LANDSCAPE LIGHTING Franco Landscaping, Inc (317) 858-3858 MOBILITY / ACCESSIBILITY CYA Mobility (317) 530-2541
REAL ESTATE Encore Sotheby’s Patti & Jeff Carroll (317) 809-5839
MORTGAGE CrossCountry Mortgage (317) 666-4679 MUSIC THERAPY Resounding Joy (858) 888-0899 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
REALTOR Carpenter Realtors-Jeremy Page (317) 413-5311 F.C. Tucker Nicole Lyon (317) 501-0639 REGENERATIVE MEDICINE/STEM CELL THERAPY Destination ReGen (317) 522-1980 SCHOOL Dynamic Minds Academy (317) 578-0410
SCHOOL - SPECIAL NEEDS The Fortune Academy (317) 377-0544 SCULPTURE, POTTERY & ART Ripple Mobile Arts (317) 514-8469 SPECIAL EDUCATION CONSULTING IEP Services, LLC. Sheila Wolfe (317) 573-9610 SUPPORT SERVICES Easterseals Crossroads (317) 466-1000 The ALTRUIST Group, LLC (317) 547-3041 x1005 THERAPY & TESTING SERVICES The Brain Center (317) 748-0034
Your Dream Makers Team. Making Your Real Estate Dreams A Reality!
Branch Manager, CRS, GRI
Branch Manager, NMLS # 664589
317-658-5240 317-413-5311 www.facebook.com/YourRealtorJeremy jpage@callcarpenter.com
www.yourrealtorjeremy.com
811 W. Main Street Suite 210, Carmel, In 46032 Branch NMLS #33041
HardWorkingMortgageGuy.com teamripma@advisorsmortgage.com
Years of SOLD
November 2021 • Special Needs Living
7
MEET THE Special Needs Living
TEAM
JAMIE MCCABE Publisher & Area Director
BRITTANY LOWE Event Executive
CHRISTINA MCGAIRK Editor and Writer
CHRISTIA WOODFORD Publishing Assistant
MARIA SMIETANA Editor & Writer
HEATHER GREGG Photographer 21 Vines Photography
LEAH PARKS Knightingale + Willow Photography
ANGIE ARLINGTON Community Engagement Coordinator / Writer and Contributor
WRITER & CONTRIBUTORS
ANGELICA N. GRAY, MA, BCBA, LBA
PAUL HATHCOAT
CARLA MILLER
LISA MONGE
AARON OLSON
SHANNAN PENAFLOR
LAURA SPIEGEL
SHEILA WOLFE
DEANDRA YATES
MAUREEN MARSH
REBECCA WOOD
ZACH ELLIOTT
MATT KNIGHT
Wonder if music therapy might be the right fit for your child?
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Contact me to check out new classes available at The Main Squeeze, a new arts and movement co-op in Carmel.
lzehren@resoundingjoyinc.org | 858-888-0899
RESOUNDINGJOYINC.ORG 8 Special Needs Living • November 2021
impact supporters
Thank you to the below Impact Supporters for helping to support Special Needs Living Magazine
Heather Gregg – 21 Vines Photography – 317-345-7687 Portrait Photographer – I love to photograph families and children. I’m available for seniors, engagement, maternity, newborn lifestyle, cake smash, headshots, extended family sessions, and more!
Matt Hadley – AP Engineering & Consulting, Inc. - (317) 828-0250
This monthly magazine is free on behalf of the supporters. The Impact Supporters help us to get the printed copy out to more families. If you would like to help support Special Needs Living Magazine, please reach out to SpecialNeedsLivingIndy@n2pub.com.
David G. Yearwood, CFP® Vice-President
Helping People Make Smart Choices About Their Money for the Reasons That Are Important to Them • Creating your financial road map and providing guidance through life’s transitions • Celebrating 35 years of serving clients at Charter Advisory Corporation • One of only 29 recipients to have been named an Indianapolis-area Five Star Wealth Manager award winner each year since 2012 Working towards the realization of your dreams is paramount in our relationship with you. The process of understanding your current financial situation is vital in making prudent decisions towards your future goals. We will walk with you, with experienced guidance, toward your financial destination. 250 E 96th Street, Suite 200 • Indianapolis, IN 46240 • Phone: 317-844-7416 dyearwood@charteradvisory.com • www.charteradvisory.com
2012 - 2021 winner David G. Yearwood, CFP
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November 2021 • Special Needs Living
9
Jeremy South - Ripple Mobile Arts
A Fun Art Day at Ripple Mobile Arts BUILDING A VASE
What a fun time everyone had learning how to build a vase! Thank you to Jeremy with Ripple Mobile Arts for opening up your studio and hosting this event! Thanks also to everyone who came out to enjoy the afternoon together. It was neat to see all the beautiful vase creations come together as each person incorporated the skills Jeremy taught during the class and molded the clay together. It was peaceful to take a moment to step back and be creative. If you are looking to participate in a future art class in-home, or in-studio, or to book a party, check out their website below. You can also scan the QR code to learn more about all the fun ways to be creative with clay and pottery.
Scan to book an in Studio, in person Art Class or Party!
Located at 4550 Central Avenue, Indianapolis Book an in-studio or in-person class here: https/www.ripplemobilearts.com/bookings-checkout/ family-art-class-at-my-studio?referral=service_list_widget
10 Special Needs Living • November 2021
Free Virtual Art Class November 12th 7-8pm - Scan code to join the call- (Email ripplemobilearts@gmail.com to get an art box delivered )
Looking for a fun movement activity the whole family can enJOY? Interested in boosting brain function while increasing strength and flexibility in your body? WE HAVE THE CLASS FOR YOU!
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11952 Fishers Crossing Dr, Fishers, IN | (317) 579-9300 | www.gymrootsinc.com November 2021 • Special Needs Living 11
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
Indy Neurofeedback is Changing Lives! Do you or someone you love suffer from ADHD, Anxiety or Autism? Let Us Help You Explore Your Options.
Neurofeedback is a non-drug, non-invasive solution to symptoms related to brainwave dysregulation. It's natural and offers a fix to the problem, not just a bandage that masks the symptoms. "We followed the same path most of the other autism parents do with GFCF, DAN Dr., supplements, HBOT. What really made a difference in our son’s attention span, executive processing skills, and anger management was neurofeedback through INDY Neurofeedback and Leanne O’Neil." ~Maria S. (parent)
Schedule a consultation today! 8801 N. Meridian, Suite 306, Indianapolis, IN 46260 (317) 888-8500 • www.indyneurofeedback.com
12 Special Needs Living • November 2021
YOUR CHILD DESERVES TO REACH HIS FULLEST POTENTIAL AND BECOME A VALUABLE PART OF HIS COMMUNITY
Looking for physical, occupational, or speech therapy for kids? Choose a family-friendly therapy center that makes parent education a priority. According to the Center for Disease Control, 15% of children between ages 3 and 17 have encountered some form of a developmental delay.
Is your child developing at the "right" pace? REQUEST A CHILD DEVELOPMENT EVALUATION TODAY! WeeSpeak Lafayette • 765-446-8300 35 Executive Dr, #5 • Lafayette, IN 47905 weespeaktlc@gmail.com • weespeaktlc.com
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– F O R YOU – BY YOU –
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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. Let’s Get Social
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Do you run a business that supports the Special Needs Community and are looking to advertise and support the Special Needs Living magazine email:
To view several story options with quick links to answer questions and upload photos go to Linktr.ee/Community.Stories.
Accomplishments/Achievements/Milestones Looking to Celebrate all Special Needs Individuals
Some accomplishments and milestones take years ... We want to recognize you/them! Are you or your child celebrating a birthday, milestone, achievement, or accomplishment? We want to recognize you – email us at SpecialNeedsLivingIndy@n2pub.com.
Jamie.McCabe@n2pub.com.
Highlighting all Special Needs Businesses
Do you have special needs and run a business? We will highlight all those with special needs who run a business for free – email us or go to Linktr.ee/Community.Stories and click on (Special Needs Living – Business Profile Q&A).
WOULD YOU LIKE TO SHARE A STORY? SCAN HERE TO SUBMIT A STORY TO BE IN A FUTURE ISSUE OF SPECIAL NEEDS LIVING!
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.
SCAN HERE TO VIEW THE PAST ISSUES OF SPECIAL NEEDS LIVING!
SCAN TO GET SPECIAL NEEDS LIVING DIGITALLY THOUGH TEXT MESSAGE AND TO KEEP UP TO DATE ON ALL THE LATEST IN THE COMMUNITY!
November 2021 • Special Needs Living
13
meet the norton family By Rae Swift
Originally from Buffalo, NY, Jill and Greg Norton currently live in Noblesville with their two sons, Liam, 4, and Luca, 2. Both boys have autism spectrum disorder. As a family, they enjoy going to all of the parks and splash pads around Hamilton County, having dance parties in their music roomslash-office, and traveling and exploring new places, especially beaches. Being from New York, Jill says they are diehard Buffalo Bills fans and enjoy CrossFit and Olympic lifting themselves. They are a big part of their community both at their CrossFit gym, Three Kings Athletics, and in their own neighborhood, which often hosts food truck nights for everyone! Jill says, “There have been many struggles with the autism diagnosis, but the biggest battle by far has been coping in general. Since there is not enough research on where autism stems from, the question marks continue to go through my head. Why us? What did I do wrong? Where do we go from here? Will Liam and Luca have typical childhoods and adulthoods?” Fortunately, they are incredibly happy little boys and simply love life. Liam recently has become more verbal, and Luca has just begun talking himself!
JILL,
GREG, LIAM
& LUCA
14 Special Needs Living • November 2021
Jill also worries about the judgment that all special-needs families face. She wishes society would become more accepting and open-minded. Greg said when their son Liam was first diagnosed, he sat in the darkness trying to figure out where he had gone wrong. “Then I looked at him the next morning and realized that nothing was wrong,” he said. His sons’ diagnoses have changed the way he looks at life and taught him to always live in the moment. Both of the boys attend full-time ABA and Jill works as the operations manager at Adapt for Life, an ABA center on the westside of Indianapolis. She says the job has made her a better mom and given her a desire to help other families facing similar challenges. Greg is an account executive at Salesforce and is hoping to create a team there to promote autism awareness across Indianapolis. Greg and Jill want others to understand the importance of early intervention. Even though those are dark hard times going through diagnoses, the long term success and impact you will see on your child is priceless! You have to be very selfless during these times and embrace every day successes. Ultimately, Jill and Greg want people to know, “embracing autism, accepting the diagnosis, and educating yourself and others will allow for a more positive future for your child. Advocate for them and enjoy the little things. Comparing to typical children will not help. No person on the spectrum is less than anyone else, they’re just different.”
Luca (2)
Liam and Greg
Greg, Luca, Jill, and Liam
Luca and Greg
Luca and Jill
Jill and Liam
Adapt for Life provides a positive learning environment
to help your child learn & grow! Currently No Waitlist for ABA Therapy Services
Luca, Jill, Greg, and Liam
Liam (4)
Individual Treatment Plans shaped by your child’s needs and designed to help your child thrive.
Team Collaboration
with your child’s physician, other therapists, and teachers to ensure your child is able to reach their full potential.
Evidence-Based Practices based on the
latest research.
State-of-the-Art Therapy Tools & Techniques with
progress reports and graphs you can access via our parent portal.
Do you have a caregiver that you would like to nominate to be in an upcoming issue of Special Needs Living? Email us at SpecialNeedsLivingIndy@n2pub.com.
317-383-0188 · adaptforlifeaba.com 6640 Parkdale Place, Ste R, Indianapolis, IN 46254 November 2021 • Special Needs Living
15
By Sheila Wolfe IEP Services
THE ABCs OF IEPs
The Difference Between Progress and Meaningful Progress It is important for parents to understand the difference between “progress” and “meaningful progress” when it comes to reports from their child’s school. The Supreme Court has ruled that schools must provide programs calculated to provide “meaningful progress” to students with disabilities. In this article, we will discuss how a parent determines if their child is truly making meaningful progress through the services and supports provided in the IEP.
For an IEP to deliver meaningful progress, it should be written with the intention of closing the gap between a student with a disability and their non-disabled peers. However, each student is unique, and some students will not have the ability, regardless of intervention, to be at “grade level” with their peers. Still, the IEP must deliver services that close that educational gap to whatever extent is possible for each student. The idea of closing the gap can be seen in the graphics below borrowed from “MindChicago” at https/mindchicago.com/ blog/2016/3/18/t0uck235qoqg2nb8et7dhbo4hstuc6
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
Chart One
Helping families receive a meaningful education for their children in public schools
IEP IEP Services, Services, LLC LLC Integrated Educational Programming
Sheila A. Wolfe Special Education Consultant
sheilawolfe@sbcglobal.net Please email for more information.
16 Special Needs Living • November 2021
Chart Two
In the first chart, we can see that Dylan has made “progress” in his reading skills during the third grade. However, Dylan’s trajectory (the slope of the line of his progress) is the same as that of his peers. In a progress report under the first scenario, a parent may be told that Dylan made significant progress in reading for
that school year. If a parent just considers where Dylan began the year and where he ended the year it would seem so. But if compared to his peers, Dylan would remain significantly behind his peers forever given the interventions provided in the first scenario/IEP. If a parent correctly assesses this situation, they will advocate for a more intense or perhaps a completely different intervention to achieve meaningful progress (closing the gap). In the second chart, Dylan’s trajectory is greater than that of his peers (the slope is steeper). This means he has closed some of the gap that exists between his reading level and the levels of his peers. If the school continues to provide the same reading intervention (or even increases the intensity of that intervention) Dylan has a shot at catching up to his peers. This is the definition of meaningful progress.
It is also important to use norm-referenced tests (NRT) when calculating student progress. When using an NRT the student’s scores can be compared to his peers and national averages. Schools often use assessment tools like Fountas & Pinnell which is considered accurate at measuring an individual student’s reading level. However, Fountas & Pinnell is not a norm-referenced test and therefore cannot provide information to compare a student to same grade/age peers. If the school is not providing norm-referenced tests when reporting progress, the parent can request this testing be completed. It is best to have this type of assessment built into the IEP as the progress monitoring tool, but if it is not, the parent has the right to these assessments for any area of academic achievement. Remember that the school has 50 instructional days to complete any requested assessments and hold a case conference to discuss the results, so plan accordingly. Here are some good sources of additional information on progress monitoring and meaningful progress: https/www.wrightslaw.com/law/art/endrew.douglas.benefit.fape.htm https/www.wrightslaw.com/info/progress.index.htm
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BECKY CASH
By Maria Smietana
L a u n ch es C a m p a i g n fo r Sta te Re p rese n ta t i ve
Becky Cash
Becky Cash is a board-certified holistic practitioner and owner of Indy Natural Health Center in Indianapolis. She is also the author of Healing Autism Naturally. She and her husband Chris are the parents of six children, four of whom have medical conditions, including autism, autoimmune disorders, chronic Lyme disease, juvenile diabetes, mitochondrial disease, and progressive paralysis. The Cash family was featured in the first issue of Special Needs Living.
SNL: What motivated you to run for public office? Cash: To be honest, the idea of running for office was not a completely far-fetched idea for me given the cloth that I was cut from, so to speak. I come from a family that did not hold back in political discussions. It was a regular topic at the dinner table, as well as with extended family on holidays. There was always a mixture of political beliefs, and while I distinctly recall who had differences of opinion, I don’t remember it becoming a point of contention [between them]. What a different age that was, though it was not that long ago! That said, I did not think that I would be running at this time, and I did not think that I would be starting with the state legislature. However, a friend put a bug in my ear back in February, noting that someone needed to run in my district to fight for medical freedom. I laughed and said, “I will help you find somebody.” SNL: What other experiences in your life led up to your decision to run for office? Cash: As the months went on – after research was literally dropped in my lap, after discussion with my husband, and, quite honestly, what I believe to be a prompting from God – I realized that I was, in fact, being called to take up this campaign. I have never been one to shy away from a challenge, so this didn’t seem like the time to start doing so. My conviction to run for office was further confirmed when we saw that in many ways, our legislators failed the families of Indiana when they did not pass medical freedom legislation in this past session. Two years ago, I am positive I would not have said yes. At that point in time, my husband and I were barely keeping our heads above water. We’ve reflected a lot on this recently and we can honestly say that we spent about 15 years drowning. At times we didn’t know what the next hour or minute would bring, let alone the next day. We often laugh that when things get calm, we should probably worry and wonder what God is planning. I am so grateful to no longer wake up every morning and go to bed every night not knowing if one of my children would be in crisis or have to go to the hospital or heaven forbid, stop breathing. I am so grateful to finally be at a point where the road ahead is clear and to let my family be a part of executing change in the State of Indiana.
18 Special Needs Living • November 2021
SNL: What changes would you like to see made? Cash: I think the biggest change that is needed is one that is not politically correct to talk about – we need our legislators to be stronger and stop walking the middle ground. They can’t continue to campaign on tough issues, and then, once in office, pacify the voters by pretending to vote for real change while mostly voting with the majority on politically “safe” bills. We watched heads of committees hold bills hostage during the last legislative session rather than allow committee votes. But I believe popcorn was voted in as our state snack (laughs). I am running to protect and build Indiana families. We have so many entities that aren’t just consciously tearing our families down but doing it through lack of action. For example, I think that most special needs families would agree that we are financially beaten down in an effort to take care of our families. I am grateful that Governor Mike Pence signed legislation years ago that would give support to every family in Indiana with a special needs child. This family service waiver is an amazing piece of legislation that does not exist in many states. But in practicality families like mine and those in this magazine are going into bankruptcy to get our children back to health and normalcy. Many children are born with special needs but [in my opinion] one of the biggest causes of medical need in this country and in this state is
Cash Family
Cash Family
pharmaceutical and medical injury. Look, I can’t run on the premise that legislators need to get a backbone if I am not willing to speak the truth even at the risk of not getting votes from certain people.
SNL: How can others in the community rally together to help make a change?
My family stopped counting when we had spent over $100,000 to treat one of our children after what I believe was a preventable injury. We also have other conditions in our state, like chronic Lyme disease, which are only being given lip service. Families are having to mortgage their homes to help pay for treatments that can cost tens of thousands of dollars.
Cash: Change comes through action. There are so many different actions that can be taken. At the most basic level, putting politics aside, checking in on your neighbor is not just a cliche. We talk about checking in on elderly neighbors when it is frigid outside. I hope that there are people without special needs children reading this magazine because they can check on a neighbor with a special needs loved one just to say, “I was thinking of you.” Drop off cookies. Have your children make cards. Seriously, just letting a family know that you care is worth its weight in gold. Another huge need is for individuals willing to become respite providers. Thanks to the Medicaid waiver, an individual that wants to help a special-needs family for even a few hours a month can actually be paid by the State of Indiana to do that.
Then we have countless children with autism in our state that despite family service waivers, are still not getting the services they need. This means that in homes that are blessed to have two parents, one parent often has to work multiple jobs so the other parent can stay home. But many people may not realize that a parent that stays home for decades has no protections in Indiana to make sure they and their child are taken care of should they become divorced or widowed. This doesn’t even take into consideration the many single parents with special needs kids who already struggle even more. Because of the shutdowns of ABA centers and schools during the pandemic, some of these families have ended up homeless. One other thing that I would like to see changed is the requirement, once the special-needs child turns 18, that families must apply for social security disability income (SSDI) in order to keep Medicaid and family services. Right now, a family must accept almost $1,000 a month in SSDI, which they may not need, in order to get the help that they do need. Applying for SSDI is such a daunting process that it actually puts many families in the position of having to hire an attorney, who, of course, will take a percentage of the disability money as payment for their services. The other problem with this requirement is once a person has SSDI, it limits their ability to reach a point where they might be financially solvent. We need disabled adults in Indiana to be able to get services and Medicaid without also having to fight for SSDI if they don’t need it. This would save the state considerable tax dollars. I can go on and on with examples of things that need to be changed in Indiana but until we have legislators that are willing to push the button on these and so many other issues, little amendments that get slid into bills are all we have.
Donate to Friends of Becky Cash Please scan to donate to the Becky Cash campaign
From a political perspective, there is much that can be done. I highly recommend that people join organizations that follow the bills in the state that matter to them. For example, there are medical freedom organizations and organizations that fight for disability services. There are organizations that watch special needs education law. We need people to study the law as it applies to malpractice and call their legislators to let them know when it is not adequate. So many of those laws were written before current legislators were even in office. If I am blessed to get a legislative seat in Indiana, I hope that my constituents will contact me and make me aware of legislation that matters to them. Ultimately, I can’t promise how I will vote on each piece of legislation, but I absolutely will listen to the voters in my district and do my best to vote accordingly. So, phone calls, letters, and meetings with legislators are very important. The other thing we need is for people to step up and run for office. We need people to run for every sector of government, from school boards to town and city councils to mayor, the Indiana State House, and right up to governor. Regarding my campaign, I genuinely want to know the wants and needs of my prospective constituents as I am running. I hope that people will find me on Facebook and other social media sites to learn more about my campaign and if they wish, to support me. As a mother of six children, several of whom have special and November 2021 • Special Needs Living
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medical needs, protecting and building up Indiana families is my top priority. I believe that is done by empowering individuals and families, limiting government, and eliminating the red tape that prevents families from getting what they need.
blessing of having a very large district with people on both ends of the economic spectrum and from both rural and suburban areas is that the ability to make an impact truly excites me. It will just be a lot of ground to cover.
SNL: What hesitations have you had about running?
SNL: Additional thoughts?
Cash: Of course, there is always hesitation and if there is not, then that person might want to examine their motives in running for office. At the same time, there comes a point when you look at the trajectory of where a sector of society is going, and you make a decision. Either you are happy with that direction, or you are not, and if you are not, I believe you have a moral obligation to do something about it. That something is different for each person and through discernment, they will know what they are supposed to do. I didn’t plan to run for public office, but when the call was made, and I allowed God and the people around me to speak, I knew it was time to step up. I guess that is my philosophy – do it scared until you are not scared anymore.
Cash: As I shared, I grew up in a family that did not shy away from the topic of politics. But other than campaigning for one of my high school teachers, which was probably a conflict of interest (laughs), and one other family member that was on a town council in another state, I don’t have a lot of political experience. I think the biggest part of my past and upbringing that propelled me to move forward was simply the fact that we were not raised to hide. Over the years, I have also grown tremendously as a person, and I do believe that we all have the ability to “skill up” to do what we need to do. Finally, as the granddaughter of Holocaust survivors and a civil rights attorney, I truly believe that “All that is needed for evil to prevail, is for good people to do nothing.” This quote has been attributed to many but most closely matches the words of John Stuart Mill.
SNL: How can others get involved in your campaign? Cash: There are so many ways that people can get involved. Of course, I hope that people will visit www.beckycashforIndiana.com and our social media pages. If people would like to canvass, help with events, or host fundraisers, we will need all the help we can get because it [House District 25] is a very large district. But the
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.
Special Needs Planning & Elder Law Attorney
Here to help you put plans in place to give you peace of mind. Elizabeth A. Homes is a special needs planning and elder law attorney. She has been licensed and practicing law since May of 2014. Her practice at the Law Office of Elizabeth A. Homes LLC is focused on Special Needs Planning, Guardianships, Elder Law, Estate Planning, and Probate Work. This includes Wills, Powers of Attorney, Advanced Directives, Trusts, Trust Administration, Medicaid Planning, Special Needs Planning, Guardianship, and Probate. She is admitted to practice law in the State of Indiana.
We ask "What If?" so you don't have to ask "What Now?"
Contact Kristin Richards Today!
317-698-5264 | teamrichards25@yahoo.com 20 Special Needs Living • November 2021
Elizabeth A. Homes, Esq., MBA ehomeslaw.com | 317-660-5004 elizabeth@ehomeslaw.com 10412 Allisonville Road, Suite 200A Fishers, Indiana 46038
Piece by Piece was founded in February 2019 to bring ABA therapy services to underserved communities. Since then, we've grown to four locations: Lebanon, Frankfort, Monticello, and Lafayette. We have also recently welcomed Indiana Autism Services to our network of clinics, allowing us to serve clients in Crawfordsville and Greencastle as well. Our Board Certified Behavior Analysts work closely with families and other stakeholders to ensure generalization of skills across all settings, including home, school, and the community. We are passionate about providing high quality services to our families and being a resource for the communities we are a part of. Contact us today to learn more about the Piece by Piece difference!
Waiver Services Behavior consulting through the BDDS waiver Piece by Piece ABA Therapy Monticello: 574-240-2192 Lafayette: 765-448-1758 Piece by Piece Autism Center Lebanon: 765-481-2260 Frankfort: 765-670-6300 Indiana Autism Services Crawfordsville: 765-307-2104 Greencastle: 765-359-7700 piecebypiececenter.com
Accepting new clients! Now hiring therapists, behavior consultants, and BCBAs! November 2021 • Special Needs Living
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Events provided by : Brittany Lowe Event Executive
local LOCAL
Important Note: Prior to attending any events please be mindful of any COVID-19 restrictions. Please review the state mask covering executive order. There are exemptions within the order that include children under 2 years of age anyone with a medical condition that precludes a face covering. Since COVID-19 is still among us there is a possibility that the events listed and places to go could be canceled, rescheduled, or closed.
THE ARTS
Note: Don’t forget to apply for the Access Pass! The Access Pass Program allows for families that meet the specific requirements listed below to visit the Children’s Museum and all participating locations for $2 per family member per visit, for up to two adults and all dependent youths living in the household. Qualifications include the following:
Peanut Butter & Jam: The Shake Ups Nov. 13 at 10:30am The Palladium (west entrance) 1 Carter Green Carmel, IN 46032 317-843-3800 https/thecenterpresents.org/tickets-events/events/2122/ center-education/pbj-the-shake-ups/
- Hoosier Healthwise Insurance (Indiana’s health care program for low-income families, pregnant women, and children) - SNAP (Supplemental Nutrition Assistance Program - TANF (Temporary Assistance for Needy Families) Apply Here: https/www.childrensmuseum.org/visit/ hours/access-pass
Jubilate Choir For Children with Special Needs-Accepting New Students For children in grades 3-9. No audition required. Wednesdays, 6:45 – 7:30 pm Butler University Lilly Hall Room 133, 4600 Sunset Avenue Indianapolis, IN 46208 www.icchoir.org/join or call Lauren Southard at 317.940.9640
A Beef & Boards Christmas Nov. 26 – Dec. 23 Beef and Boards 9301 Michigan Rd. Indianapolis, IN 46268 317-872-9664 https/www.beefandboards.com/Online/default.asp
SPORTS Indiana Pacers Nov. 1, 3, 13, 20, 24, 26, 28 All games start at either 7pm or 5pm. Bankers Life Fieldhouse 125 South Pennsylvania St. Indianapolis, IN 46204 317-917-2727 https/www.nba.com/pacers/schedule Indianapolis Colts Nov. 4, 14, 28 Lucas Oil Stadium 500 S. Capitol Avenue Indianapolis, IN 46225 317-262-8600 https/www.colts.com/schedule/
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Phantom Oct. 7 – Nov. 21 Beef and Boards 9301 Michigan Rd. Indianapolis, IN 46268 317-872-9664 https/www.beefandboards.com/Online/default.asp Christmas Gift & Hobby Show Nov.10-14 Indiana State Fairgrounds and Event Center 1201 E. 38th St. Indianapolis, IN 46205 317-927-7500 https/www.indianastatefair.com/events/2021/christmas-gift--hobby-show Christmas Nights of Lights Nov.12-Jan. 2nd Indiana State Fairgrounds and Event Center 1201 E. 38th St. Indianapolis, IN 46205 317-927-7500 https/www.indianastatefair.com/events/2021/christmas-nights-of-lights
events EVENTS
AWARENESS/ACCEPTANCE
Epilepsy-Edible 2021 Indy Foundation Golf Outing Golf Club of Indiana 6905 South 525 East Lebanon, IN 46052 317-769-6388 https/allevents.in/lebanon/2021edible-indy-foundation-golfouting/200021181429404 International LGS Awareness Day Nov. 1 5pm-9pm Free Online Event Campaign https/www.facebook.com/ events/336905778128819/
Illuminate for LGS Nov. 1 at 7pm-Nov. 6 at 10pm 6:00pm (gates open at 5pm) Free Online Event https/www.facebook.com/events/252551403379691/ SOCIAL EVENT A Night in Paris Adult Social Nov. 12 6pm-8pm Camp Red Cedar/YMCA of Greater Fort Wayne 3900 Hursh Rd. Fort Wayne, IN 46845 260-755-4961 https/www.indianadisabilityresourcefinder.org/view/ event/2933/adult-social/93
Free Virtual Art Class with Ripple Mobile Arts November 12th, 7-8pm to participate in the event email ripplemobilearts@gmail.com to pick up an art box or get it delivered. To join the Virtual Art Class, scan the QR code on the 12th at 7pm
To join the Virtual Art Class scan the QR code on the 12th of November at 7pm
Is there a local event for the Special Needs community you would like us to promote in an upcoming issue? Email us at SpecialNeedsIndy@n2pub.com.
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Lessons Learned:
by Angie Arlington
Record Keeping As a parent, paperwork can be overwhelming when you have a child with diverse abilities. My personal journey with my son made me realize how valuable documents are for many reasons. I started two binders when my son was young-one for medical and one for education. This worked for the first seven years and then I started keeping documents in file folders. Eventually, I went to a two-drawer file cabinet for all his documents. I thought I had been doing a great job until he turned 18 and we applied for Social Security. I have always agreed with the idea of having a “medical home”-your child’s main doctor should be copied on everything from other doctors. When I viewed the documents in his record, I found that almost 95% of my son’s mental health records were never shared with his pediatrician! Many doctors have patient records accessible online now and that is better than everything being saved on paper. One of the therapists my son saw in middle school had a fire and all the records had not been computerized. I learned to never assume that patient portals will have all records backed up. Years ago, two different medical facilities upgraded to new programs and some information did not transfer over.
problems. Nothing to indicate how severely his mental health was impacting his learning. With all the phone calls and meetings I had with different school personal, there should have been pages and pages of incident reports and summaries of issues addressed. To my dismay, I also realized that I called more than I emailed because no one would return my emails. So again, I had no proof of what really went on at school. Information you should have hard copies of: 1. Anything from the Indiana First Steps Program (IFSP), including daily reports from therapists and any kind of communication by email or mail. (Records can be destroyed after five years by providers.) 2. Any doctor (pediatrician, family doctor, etc.) that your child sees yearly at least. (Medical records can be destroyed in five years after the last visit.) 3. ABA Therapy- All communication via email, reports, financial records, incident reports, the initial evaluations, and most importantly, any changes in goals or behaviors while in the program. 4. Mental Health Evaluations-copies of testing, reports on progress. Get copies of complete medical records when you leave. (Records to be destroyed in two years.) 5. School System-report cards, 504 or IEP for every year, quarterly reports, copies of communication with teachers and school representatives. Communicate via email instead of calling so details are recorded. All paperwork from special education teachers and others who work with your child. Also, ask to see your child’s school file to be sure it is correct and see what documents are in it vs. what you assume is in it. Parents should always receive a copy of any incident reports immediately!
When in doubt, save everything related to your child because getting access after the fact can be difficult. We hired a lawyer to help us file for social security and the system wanted everything possible. I spent a lot of my own time getting records from different places because my lawyer did not send requests to the correct offices and did not persist when she received no response.
6. Hospital Records-anything given to you from ER visits, outpatient tests, in-patient results, discharge papers, and any type of bills for services.
I found that it is legal for independent mental health providers to destroy records after only two years--I wish they would have sent me a notice! I had assumed that all patient files were kept for five years, so now there are gaps in the records I did obtain.
8. Medicaid and Waivers-keep copies of any paperwork, emails with case managers, and records of any services received. This should add up, as quarterly meetings are required by the state. Anything you sign, get a copy of it!
My son’s records from attending our local school system from first-10th grade were over 100 pages. Reading it, I found several items duplicated, especially test scores from all the tests the state and district require kids to take each year. There were only a few years’ worth of IEPs and report cards, but a lot of attendance notices, since he missed a lot of school due to appointments and not being well. I was astonished that there were no records from school counselors, vice-principals, or special education teachers. No notes from when I came in and talked to people about
9. Medications-Most pharmacies can give you a printout of all medications filled for the year. You can use these records to record any ineffective medications or side effects your child experienced. This is also helpful if insurance requires you to take older, cheaper medications before covering a newer, costlier one.
24 Special Needs Living • November 2021
7. Specialists-all paperwork (if you stop seeing a doctor, request a copy of your child’s records within a year.)
Remember, you have all the power if you have paperwork from everyone working with your family. Nothing can “disappear” or “not exist” if you have copies before you need them!
Estate Planning
PEAS for Kids PEAS for Kids specializes in educational consultation, advocacy, and customized assessment plans for children (grades PK-12+). Assessment plans address emotional concerns and learning disabilities such as Dyslexia, as well as characteristics of Autism Spectrum Disorder and Attention Deficit Hyperactivity Disorder (ADHD).
PEAS for Kids strives to utilize the results of our evaluations to provide recommendations for, and work with parents in advocating for their child's educational needs within the school setting.
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Experienced Attorneys Serving Hendricks, Boone, and Marion Counties and beyond. Call us today 317-852-2422 or visit hostetterlegal.com to schedule your consultation.
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Feast Your Eyes On Our Website to Gather Community Resources!
Now Hiring Direct Support Professionals Are you looking for an opportunity to come alongside & help others in the community? Give us a call today to learn more about being involved.
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317-710-7184 | connectionsin.com November 2021 • Special Needs Living
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sponsor of the month 26 Special Needs Living • November 2021
Franco Landscaping is a design/build firm that offers complete project services for almost any outdoor project one may want to accomplish. Projects may include but not be limited to the following: hardscape such as decks and patios, softscape installation if the form of shrubs and trees, irrigation, landscape lighting, holiday lighting, covered roof structures, certified smart pergola construction, pools, water features, fireplaces, outdoor kitchens and bars, estate master planning, maintenance, fertilization, and project management. For over thirty (30) years Franco Landscaping, and owner Brian Franco, have been a staple in the community as well as throughout the landscape world here in Indianapolis and surrounding areas. Building on the foundation of the company’s motto: ‘Our customer’s satisfaction is a beginning, not an end’ sets the precedence that the company strives for and is reflective in both the personnel the company has hired throughout its history and the quality of work that has been completed for their highly valued clientele. If you want to create a true outdoor retreat that is both sustainable as well as affordable, Franco Landscaping has the staff, years of experience, and knowhow to accomplish these expectations. This process begins during the very first interaction where the design staff works with the respective client(s) to understand the goals of the project and expectations of the outcome. From there the plan evolves to meet those goals and is eventually worked by the installation crews whom ultimately use talented hands to make that plan come to fruition. Franco Landscaping designer, Tom Jones, states “sustainable outdoor living spaces and water conscience plantings are becoming the new trend in design”. Playing off this statement and due to the pandemic and concerns of future situations where travel maybe limited and/or suspended and the concern over our everchanging environment, backyards have become the new desired resort escape and environmental haven. The most desired additions to these backyard retreats include pools and hot tubs, fireplaces, and outdoor kitchens under a covered roof structure. Sustainable plant selections with limited water and chemical dependance. The investment in one’s home can be seen as a reflection to the added property value financially but the added value that cannot be measured with numbers is the added quality of life this investment can impart for all those involved. Franco’s crucial advice to any homeowner whom maybe considering a landscape project: Involve your landscape design firm from the beginning. This includes any preliminary questions such as siting key elements, traffic flow, accessibility among others. This way, the various elements of the outdoor improvements can be laid out in a way that is both functional and appealing before the first dollar is spent, and costly re-work can be avoided. “There is a purpose behind how [elements are incorporated] into a design,” Franco noted, “and that is what we do best.” As an Angie’s List Super Service award for nine years running and a complaint-free member of the Better Business Bureau since 1997, Franco Landscaping has a track record that has withstood the test of time. For more information or to set up an appointment, see the company’s website and contact information below. Brian Franco, President Franco Landscaping Inc. 9330 Maloney Rd. Brownsburg, IN 46112 www.francoland.com 317-858-3858 November 2021 • Special Needs Living
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Fun
at Adrenaline Family Adventure Park! Couldn’t have asked for a better way to spend a Sunday afternoon. Everyone had an absolute blast at our first Special Needs Living magazine event at Adrenaline Fishers! They have a wonderful space. We loved having Ripple Mobile Arts there to provide free art activities. Resounding Joy Inc. brought many musical instruments for everyone to try out. Thanks to all of the supporters and families who came out. Some great connections were made, and we look forward to many future events. At Adrenaline, we believe everyone deserves more adventure in life. With more than 50,000 square feet of exciting attractions, thrill-seekers of all ages and abilities will find something active to do. Join us for our Free Play sessions where you can roam the entire park and choose your own adventure. We also offer birthday parties, team parties, and group events. Check out our party packages, or contact our event staff to customize your next big event. We have options for groups of 10 - 250 or more. Need a place for your fundraiser or want to rent the whole park? We can do that too! Adrenaline also has weekly special events for our little adventurers (walking to age 6), our friends with differing abilities, and other great programs to be announced soon! We are so excited to be a part of the Fishers community, and hope to become your favorite place for fun!
Adapt for Life
10080 E. 121st St., Suite 182 | Fishers, IN 46037 | (317) 572-2999
DDSi-Developmental Disabilities Systems, Inc.
Ripple Mobile Arts
28 Special Needs Living • November 2021
Resounding Joy
Marvelous Margaux
Angie Arlington- Special Needs Living Community Engagement Coordinator
“My fiance and I brought all 4 of our daughters. We all had a blast, it was just a wonderful Sunday for us.” - Quote above from Arianne, In the photo is her fiancé and their daughter Jada who has epilepsy.
Carter’s Play Place
Enjoying some art with Ripple Mobile Arts
Fortune Academy
Lori Varas- Wholestic Nutrition
The wonderful team at Adrenaline Family Adventure Park Peas for Kids
Supporters of Special Needs Living Magazine
Silent Blessings Deaf Ministry
November 2021 • Special Needs Living
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22q awareness month By: Maria Smietana Photos by: Leah Parks-Nightingale + Willow Photography
Meet the Bruinsma Family
Troy, Rosalyn, Tucker, and Grace Long-time Carmel residents Troy and Rosalyn Bruinsma had never heard of 22q11.2 deletion syndrome (22q) until their daughter Grace was born. “Finding information and people who were familiar with it [22q] was a struggle, said Rosalyn, a Pittsburgh native who grew up in Indiana. “It has been a scary path to navigate. Our daughter’s health and emotional challenges made us educate ourselves with as much information as we could find and seek out every avenue to help her live the best life possible.” 22q deletion syndrome is a disorder in which a small piece of genetic material is missing from chromosome 22. According to the 22q Family Foundation (https/22qfamilyfoundation.org.), this deletion can affect nearly any system of the body and can be the cause behind nearly 200 health and developmental issues.
Troy Rosalyn Tucker 20 Grace 11
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.
Grace was born with several of the most common features of 22q. Her heart abnormality required two open-heart surgeries before she was 4 years old. “During the first surgery, she had complications and spent an extended time in the ICU,” Rosalyn recalled. “It was very scary and put many things about our lives in perspective.” Her submucosal cleft palate also required surgery, and her immune system, said Troy, is challenged to fight even the mildest of infections.
Tucker 20 and Grace 11
Rosalyn and Troy
Troy Rosalyn Tucker 20 Grace 11
Because each child born with the syndrome can have any number or combination of these issues, 22q can be very difficult to diagnose. But as research on 22q has progressed, those that occur most commonly have been identified, and include heart abnormalities present at birth, immune system malfunction, distinctive facial feature differences, submucosal cleft palate, kidney abnormalities, low levels of blood calcium, decreased blood platelets, and hearing loss. Common developmental problems include delayed growth and speech and mild intellectual or learning disabilities. Children with 22q are also more likely to have ADHD and autism spectrum disorder than other children https/medlineplus.gov/genetics/condition/22q112-deletion-syndrome.
“As scary as the health challenges are, the social and emotional issues are sometimes harder to deal with,” Rosalyn said. “The hardest thing is to hear an evaluation and see the list of challenges that Grace faces. We had [to learn to accept] that if we don’t acknowledge those, we can’t help her. We have wonderful support teams that also want nothing but the best for Grace and when we work together, we are far more successful. We learned to celebrate the little things and never underestimate what she is capable of. I always tell people that she has taught us persistence, patience and to appreciate the simple joys.” Now 11, Grace attends Clay Middle School in Carmel. She receives speech and occupation therapy at Mini Minds, along with other support services at school. She takes dance and piano lessons and loves to draw.
Tucker and Grace
30 Special Needs Living • November 2021
The Bruinsma’s oldest child, Tucker, now 20, is a sophomore at Belmont University, a performance-art focused school in Nashville, TN. “He has been an amazing influence for Grace,” Rosalyn said. “They both enjoy music and art.” As Grace grows, meets her challenges, and benefits from surgeries and treatments for the medical aspects of her condition, the Bruinsmas are increasingly able to enjoy the things that other families take for granted. The family loves fall and Halloween, so every year, they go pick pumpkins then carve them together. Grace and Tucker have a tradition of decorating a gingerbread house for Christmas together every year. “When Grace was little, we tried to avoid loud and busy places to eat,” Troy said. “She was also more limited in what she would eat. As she has gotten older, she loves to go out and try new places, as does her brother. Our whole family generally loves all types of restaurants.” With the many surgeries and illnesses Grace endured while she was little, the Bruinsmas didn’t have the opportunity to take many vacations, so they’re trying to make up for lost time. So far, the beach has been a favorite, as has just exploring new places and trying new things.
“Wherever we go, safety is always our main concern,” Rosalyn said. “With Grace’s immune system challenges, we are always very aware of our surroundings. But we have also learned that sometimes you just need to go with the flow and take things as they come. I am sure there are some things we’re so used to doing that they are now second nature and don’t even seem challenging – it’s just what we do.”
be done with it,” Rosalyn recalled. “At the first try, she got scared and you could see the tears start to fill her eyes, but she took a minute, and then tried again... and again... and again... and then she went all the way to the top!”
At home, family dinners might be taco night, roasted salmon, and anything on the grill. Pancakes on the weekend are a must. “We love to have friends over to cookout and relax in the backyard,” said Troy, a life-long Hoosier who grew up in Lafayette. “We’ll build a fire and sit and talk and laugh.” The family’s playful French bulldog, Rocco, joins right in the fun. A happy memory that has stayed with Rosalyn came from an occasion when Grace attended a birthday party at a rock climbing center. “I really thought she would try once, get scared and
Grace is a beautiful and photogenic child who poses patiently for pictures, sporting a big smile and sometimes an impish grin. Her lean frame shows off clothing well, leading one family friend to comment that she may find her calling as a model. But she’s not too old to enjoy being tucked into bed by her parents, who still sing “You are my Sunshine” to her every night. The Bruinsmas credit the many people and places that have helped them navigate the special needs world, especially the 22q Center at Nationwide Children’s Hospital (https/www.nationwide childrens.org), the team at Mini Minds, our case manager, and Grace.
Book your personal studio class with your child, family or friends and have the entire studio. With over 20 years experience, Jeremy South offers student guided classes in fused glass, handbuilding in clay, pottery wheel, STEM and recycled art. Choose your personal class design. Classes held inside/outside Northwood Christian Church located at 4550 Central Avenue, Indianapolis. Covid-19 safety followed.
A gentle approach in art for your child or family. Visit ripplemobilearts.com for class information or call 317-514-8469 November 2021 • Special Needs Living
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We are committed TO BUILDING BEAUTIFUL SMILES BY FOCUSING ON BEING PERSONABLE, POSITIVE, AND PROFESSIONAL! With special training in craniofacial, surgical, and special care orthodontics, the staff and team at Hallmark and Rigsbee Hall Orthodontics is committed to you! We are excited to see your beautiful smile and have a lot of fun along the way. Call us for a free consultation.
Carmel & Shelbyville IN rigsbeeorthodontics.com 317-574-0612
Noblesville & Elwood IN hallmarkorthodontics.com 317-773-5515
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Needs Living November 2021 32 Special locally owned and •operated | Monday-Friday: 10AM-6PM | Saturday: 10AM-5PM | Sunday: 12pm-5pm
November 2021 • Special Needs Living
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L I V I N G
W I T H
Autism & Epilepsy T H E I N S P I R A T I O N B E H I N D S P E C I A L N E E D S L I V I N G M A G A Z I N E By Hannah Wagner
Justin, Jamie, Jaylin, Jordan and Jade
Family photo – Justin, Jamie, Jordan, Jaylin, Jade
It’s with tears of happiness that I can share Jordan’s story with you in honor of his 9th birthday. Thank you to my dear friend Hannah Wagner for taking the time to interview me and write our story. It has been a glorious nine years, we are miles further than I ever thought possible in his special needs journey, and we know there will be many more milestones to come. I hope sharing our journey will have an impact on you, or bless someone you know.
see the world through your eyes. I hope they can feel the empathy and compassion that I felt for you as you opened up and shared your pain with me. And I hope that you will be able to see yourself from a new perspective, too, one where you know beyond a shadow of a doubt the incredible mother that you are.
We will never give up fighting for you, buddy! You’re such a blessing in our life!
We’re sitting by the water at Eagle Creek Park, and I start by asking you to tell me about the very beginning. How was your pregnancy? How was his birth? You tell me that the pregnancy was normal, that you trusted the process and the doctors. For example, you got the flu shot because you were told by your doctor that if you didn’t, you would risk harming your baby. This was, of course, the last thing you wanted. So you were compliant, despite having been given no specific pros and cons with which to weigh both sides of the question and reach your decision, something that you now wish would have been clearly expressed. But at the time that was ok with you, because that’s what doctors are for, right? To guide you where they know best.
A letter from one mother to another Told by Jamie McCabe to Hannah Wagner Jamie, I’ve thought a lot about how to write this and I’d like to do things a bit differently than I usually would when writing a story about someone’s life. Writing in the third person seems too impersonal. I want your life and Jordan’s story to become very personal and real to others, even if it’s only while they read these words. For that reason, I will be writing directly to you. I hope that people can put themselves in your shoes, feel the things you’ve felt, and
34 Special Needs Living • November 2021
A traumatic birth
As you approached your due date, your doctor brought up being induced. She told you that many women decide to go this route
After last year, we thought this was a very fitting shirt.
Jordan with his mom, Jamie
and that it’s very convenient. Again, you tell me that you were given no pros or cons to weigh and that today you wish you would have been given more information. Had you known more, you might have made a different choice. But as this was your first child, you did what your doctor recommended. As it turned out, induction did not suit you or Jordan. After nearly two days in the hospital, and being given Pitocin and Cervidil, there was hardly any dilation. I can feel your exasperation as you tell me how difficult it was to wait without any results. The doctors told you that you could go home and wait, or that they could break your water for you to speed things up. At this point, I know you were anxious to meet your son, and so you elected to stay. Your labor was jump-started with your water being broken. Contractions became intense and you began to push. The pain heightened, and you were given an epidural. You stood up (something you tell me that the interns all found very alarming, and which, by the way, was not something you signed on for – having multiple interns in your birthing process, watching and learning from such an intimate moment of your life) and pushed with all your might… for hours. Not two, not three, but four and a half hours. Today, you can see the insanity in this situation. Why did they wait so long? Why did they let you push without any aid or change in direction when your baby clearly wasn’t arriving as was intended. Finally, the doctors decided it was time for a C-section. But then there arose a new issue entirely. You pushed so hard and so long that your baby boy was stuck. Your mom went with you to the operating room and videotaped what she could, so while you couldn’t see everything then, you have since watched it all. You were cut open, and the doctor reached through the opening to try and pull Jordan out while the nurse tried to push him back in by his head. You just felt a constant pulling and tugging. You do remember that the nurse was calling for more help and slipping on blood.
Jordan with his sisters, Jade and Jaylin
At long last, Jordan was freed from your body. But something wasn’t right. You pause and the tears reach your eyes and your voice tightens as you relive the horror. He made no noise, no cry. He was blue, still, unresponsive. Jordan’s APGAR score was 1. Just 1. His head was bleeding from the pressure of being stuck for so long. “Finally,” you tell me “he made a couple of little whimpers.” The aftermath At first, you and Justin didn’t ask many questions. You were beyond exhausted and in a state of shock. You both just wanted him to be okay. He spent a couple of days in the NICU, which were very challenging days for you, healing in multiple places in your body and walking back and forth from one part of the hospital to the other, just to be able to nurse your newborn. Finally, he was released and you were told that he had cephalohematoma, which is a collection of blood between the baby’s scalp and skull. The doctors described it as something he would heal from, and you were given your first ray of hope. You were relieved. Things would be okay. You followed up with a specialist and believed that Jordan would make a full recovery and all would be well. Your fears were assuaged and your trust in the medical community remained, despite your trauma. You took Jordan to all his well-child check-ups and gave him all his shots (36 immunizations in 18 months). You discussed your fears about so many shots in such a short period of time with your family and were reassured that you, and your two siblings, received all your shots with no complications. You did, however, take note of the drastic increase in the number of vaccines since you were a child (where Jordan had 36, you had 8 or 9) and you tell me that something about it all just didn’t feel right. But just like the flu shot and the induction, this was what the medical community said was normal and healthy, and so you obliged.
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Jordan’s development Two days before Jordan’s first seizure, a couple of months before his second birthday, you took a video of him. In this video, you asked him to point to his eyes, his ears, and his nose, which he does. You felt that he was growing and learning at a normal rate. His pediatrician was aware of a couple of nuances in his behavior, but nothing stood out as a cause for concern. But when his seizures started, everything changed. Jordan was diagnosed with epilepsy, and you became connected with First Steps, a program here in Indiana that intervenes early to help parents ensure their children have the support they will need throughout their life with whatever developmental challenges they may be facing. Then, as if that wasn’t challenging enough, he was also diagnosed with autism. This was something your mother had wondered about. Being an advocate for children’s mental health had her around many children and she knew what to look for. But just because she thought that his obsession with tires and spinning objects and his need to constantly have something in his hand could put him on the autism spectrum, it didn’t make you worried. Besides, you only had one child and had nothing to compare him to and just believed that he loved his toy cars. I would have thought the same thing if I had been in your position, and I honestly would not have wanted to even consider the possibility that my child wasn’t developing normally. But then it became an unavoidable and very real diagnosis for you. Jordan was autistic, seemingly non-verbal, and epileptic. Shattered dreams Even though we’re sitting outside on a sunny, beautiful day as you tell me these things, I can see the weight of the grief you’ve been carrying since you first realized that Jordan would never have a normal life. You tell me how you grapple with anger, frustration, and even guilt. Jordan is almost 9 years old at the time of our talk and cannot point to his face the way he could when he was 22 months old. You say to me through your tears, “You don’t have a child who can do something and then not do something and not think…that it could be something that he was injected with that caused that.” I know what you mean. How did he slide back in his progression? Why would he lose his ability to perform these basic identifications of his own body? Was it something he was given in his early years? I can only imagine how it would feel to begin to rack your brain for any way you could have avoided this, anything you could have done differently or better. You wish there could be a definite culprit, not only to know how and why this happened but so that you could begin to forgive whoever was responsible. But instead, you tell me through tears of anger that you don’t even know who to forgive. How difficult it must be to heal when you’re not sure where to begin. You tell me that every day you are reminded of what he cannot do. Fears plague your mind. You wonder things from as simple and logistical as “Will he still be wearing diapers when he is 40?” to questions as gut-wrenching and devastating as “Who will take care of him when we aren’t around anymore?” Your mourning is constant, the grief never-ending. And yet… you manage to see the good in it all. You’ll probably never have to have the sex talk with him or worry that he’ll get mixed up with the wrong crowd and make poor life choices. You know you’re not alone and, in fact, you’ve brought other families with
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Jamie holding the very first issue of Special Needs Living that she was able to bring to the community in November of 2020
special needs children into your house to support and love them. You’ve turned your pain into a purpose and launched a special needs magazine that connects the community to share stories and resources. But what I find most inspiring is how you find joy in his joy. You know he doesn’t need the coolest toy or the latest video game to be content. As long as he has something in his hands and space to be, he is happy. You tell me, “He has brought me and Justin closer to God by seeing God through him.” Research and healing Amidst your grief and the process of accepting a life you never expected you have maintained a fierce desire to give Jordan his best possible life and to bring him healing in any way you can. I believe it was also part of your healing to do research and find answers and try different things that could help Jordan. You came to realize that Jordan has a MTHFR gene mutation, making it difficult for his body to detoxify. This was something that was tested and confirmed by doctors, and you knew to look for this because your brother has it as well. This led to you buying your own hair test and reading a book on how to successfully administer and read the test. Through your test, you found that Jordan had mercury and lead poisoning. To confirm and discuss, you sent the results to his autism pediatrician, who responded by saying that he saw no issues. You highly doubted his response and felt frustrated by his lack of confirmation, but were vindicated when he followed up with you just a few days later.
Jordan in his new adaptive stroller. Having this has been so helpful when going places, since he is an eloper.
We enjoy taking the kids and Jordan to Indiana Beach many times over the summer
Coincidentally, this doctor was already scheduled to attend a training on how to read hair test results just after you reached out to talk about Jordan’s. After this training, he confirmed that you were, in fact, correct. Jordan did have mercury and lead poisoning. You did more research and found something called “chelation therapy.” Through this process, you administered pills to Jordan every three hours for 72 hours a week for 52 weeks straight. These substances, these chelators, bound themselves to the heavy metals and carried the mercury and lead out of his system in a way that his body could not do for itself. And this is where you started to see miraculous changes. At about 20 weeks in, he finally began to make direct eye contact with you and Justin, something he had never done before. You tell me the fog lifted. I remember when I first met you and you had been doing this therapy for several months already and you told me that he said “I love you” to you, something you’d never heard from him before. He started paying attention to his surroundings and listening with intention and even began to engage in play with his little sister. Another method of healing you’ve tried for Jordan is stem cell therapy with Destination Regen, with stem cells taken from umbilical tissue, which also yielded extraordinary results. Jordan used to run off and away whenever you would venture outside, but after the therapy, he started following directions and staying close to you. He stopped darting away and now can enjoy a walk with the family. You tell me of a time when he actually turned around and got into the car and sat down in his seat when you told him to, and I can sense the pride and joy in your heart. To see him hit these milestones is good for your soul. You know that what you’re doing is working, and you’re seeing his life improve because of it. Finally, you’ve even been able to help his seizures. Of course, Jordan has been on anti-seizure medication for quite some time, but that just didn’t seem to be enough. He would still have episodes and you knew in your heart that there had to be more you could do. You were led to Wholestic Nutrition, where they did a very thorough and complete food sensitivity test. You already knew he
Jordan getting an in home EEG test done
was gluten intolerant, but you found out that there were so many other foods to which he had mild to moderate sensitivities. From the time you started this new regimen to the time of this interview, Jordan was seizure-free –for over four months. The new lifestyle of constant food prep took time and commitment and dedication that was taxing and difficult for you, but you persevered and saw the rewards of your labor. You were even told that he was finally free of mercury and lead poisoning. Your determination never ceases to amaze me. Informed consent Jamie, I know you’ve struggled with having any sort of faith in the traditional Western-medicine community since Jordan was diagnosed, and I don’t blame you. Your research gave you due cause to believe that the high number of vaccines Jordan was administered could have contributed to his autism and seizures. Perhaps if you had been told from the start that he had a gene mutation that made it difficult for his body to detox, you would have fed him differently or asked to review the list of ingredients in the vaccines he was administered. Why aren’t children tested for this gene mutation before being immunized? Why weren’t you given more information about the flu shot you were given while pregnant to know what their possible negative side effects could be? Perhaps if you had known more about the potential risks of induced labor, you would have waited for your body to naturally enter labor instead of forcing the issue with drugs and breaking your water. Perhaps all of these things November 2021 • Special Needs Living
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could have made a life-changing difference. You will never know, and that is crushing. The issue at hand boils down to informed consent. You were not given the right of informed consent. And who knows, maybe even with all the information available you would have made the same decisions and the same results would have followed. But at least today you would have the peace of mind of knowing that you truly were told all there was to know. But you put your faith completely and totally in a medical system that didn’t give you the information you deserved to make your decisions, and this has consequently led you to a point where you feel like you can no longer trust the general narrative, and you wonder why you weren’t given all the facts. Unfortunately, many people who have experienced a tragedy live their entire lives this way, wishing they had known more. If they could have only known that there would have been a semi flying through that intersection at that time that would hit their car and leave them paralyzed, they would have left five minutes earlier. If they could have only known that their children would slip away at dinner and wind up unconscious in a pool, they never would have gone to that party. These are things no one can know, no matter how much information they are given.
Jordan loves playing in the mud over summer after it rains
Jordan loves bath time, but he really loves getting in the bath with his clothes on after we just got him out and dressed.
But with the medical community, things are different. Because there is so much that we have not studied or do not know ourselves as patients, we rely on our doctors and nurses to present us with all the information available to empower us to make choices for ourselves. But when we are treated without that individual time, care, and attention, that right is taken from us. I am so sorry this happened to you. I can see and understand why 2020, Covid, and the resulting vaccine would be very, very difficult for you to handle. This vaccine was created faster than any before. We have no long-term studies and we are asked to take a leap of faith, to do our part to help eliminate a global pandemic. Those of us who are hesitant and cautious are labeled as selfish and insensitive to others, and those of us who are excited and relieved are labeled as sheep and gullible. There is no winning here. The pressure placed upon our society to comply with a form of medicine that you genuinely believe has harmed your child is heartbreaking to you. That is why I believe Jordan’s story is so important. Not to sway people to make a decision one way or another, but to remind people that they have the RIGHT to do the research, ask the questions, and the time to make their decisions. Ultimately, Special Needs Living • November 2021 38 take
Jordan having his in-home EEG test done, hanging with his sister, Jaylin
Jordan in his ball pit on his sensory play mat
Jamie, Jordan, and Justin
they have the freedom to make their own choice based on what they believe is best for their bodies, and the right to take into consideration all of the facts their doctor can present them with, so they have the peace of mind of knowing they made the decision for themselves. I wish I could go back in time and give you the flu shot insert. I wish I could go back in time and research natural vs. induced labor with you. I wish I could go back in time and give you a doctor who would ask you all about your child, do genetic testing, and establish a personal connection based on trust and openly shared information before they would ever tell you what would need to be injected into your baby boy. Not because I’m 100% certain it would change the trajectory of what actually happened, but because it would bless you with the real experience of what personalized health care can and should be in this country. Not the end Jamie, we believe in a good God, and you said to me yourself that “this is not our forever home.” One day everyone will be given new, gloriously remade bodies, free from sickness, disease, and imperfection. We will all be completely and perfectly restored. You know this is coming, and while it does not always make the day to day life easier, it is a promise we can lean on. God keeps His promises. He chose you to be Jordan’s mother because He knew you possessed the qualities Jordan needs more than anyone else on this Earth. Ultimately, no matter how the medical world has helped or harmed you, you are still the very best mother for your
boy, and he is the very best son for you. Rest in that. He is 9 and thriving because of your ability to let God’s healing and love flow through you. I don’t think you stop often enough to think about all that you’ve done for your son and appreciate the person God has made you to be. Every time I see Jordan, he is happy. Even if he’s had a difficult day of seizures, there is a sense of contentment in him that can only Jordan leaving hospital after having come from knowing deep down seizures at 22 months old inside that his mother is here, sacrificing her life to take care of him always. Let this birthday be as much for you as it is for him. God’s love and healing doesn’t just flow through you to Jordan. It lands on your soul, too. As a mother comforts her child, so will I comfort you. Isaiah 66:13a
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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Rest& & Respite pastor’s corner By Paul Hathcoat
If you are or know a family or individual living with disabilities, you may have seen and felt the vacuum of community that often accompanies that life experience. In terms of connectedness, social opportunities, and premium things–like date nights and birthday party invitations– those privileges are often few and far between. So, the question that I, as a pastor ask, is this: Is your access to the church and its community inadequate as well? I would guess that many of you would say yes. In my years in disability ministry, I have met many families who report that they don’t have access to a quality church environment that not only accepts them or their child with a disability, but that has intentionally sought them out and embraced them all as an integral part of the body. This all too common report is unacceptable in this day and age. In response to this condition of the church and that experience, let me say first, I apologize. I apologize for the church and apologize for us pastors around the country who have not yet seen clearly the people living in our communities that walk through life with a disability. I apologize that there are sons and daughters out there that have been asked to leave or who have been urged to be left at home because they make a bit too much noise or are unpredictable and need space to move around and be themselves. I apologize that some of us in the religious world have forgotten that all parts of the body are equally important and that those that seem weakened are actually the ones we cannot do without. And lastly, I apologize that you, those readers out there that are identifying with this letter, have missed opportunities to connect with the church, the church community, and maybe even your creator. But there is hope and progress! As a special-needs pastor at White River Christian Church in Noblesville, IN, I get to not only see a church embracing people of all abilities, but I also get to be a daily part of connecting EVERY
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life to Christ. The important word there is “every.” There is a network of dynamic and quality congregations in and around Central Indiana that understand the necessity to welcome and accommodate people living with disabilities into their church. There are communities where self-appointed advocates walk the halls of the church on Sunday, the aisles of the grocery store on Monday, and the halls of the schools on Tuesdays intentionally looking for people or families that need to know that God loves them and their local church sees them. As we approach a new year, that everyone like me is surely optimistically thankful for, we also continue to approach a new age in which the Sunday school classes and youth groups around us are actively seeking out kids with disabilities to join them. A new age where church staffs and church boards are prioritizing resources to serve the disability communities around them. A new age where supports and social assistance are recognized and then made available to families through the local churches in their areas. And even a new age where ex-bounty hunters turned special needs pastors, like me, can support their families and serve their God by welcoming people of all abilities into church life and faith life, vocationally. This is what the Pastor’s Corner will be bringing to you each month. There is Hope and there is Progress! Author’s Notes – If you want to read more about the sources used in this letter each month, or hear about the disability ministries around you, feel free to contact Paul Hathcoat at the information below. Scriptures referenced – 1 Corinthians 12:12-27 Paul Hathcoat 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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42 Special Needs Living • November 2021
SANS GLUTEN NOVEMBER Gluten Free Thanksgiving Tips
Another one of my favorite holidays is Thanksgiving. I love it when we get together with family and give thanks for all our many blessings. This joyous holiday also centers around food; the golden-brown turkey, the fluffy dressing, delicious casseroles, and yummy desserts. But for those who have gluten sensitivity, it can be a stressful time and their options may be limited. Yet, it doesn’t have to be.
By Christina McGairk
Here are a few tips I’ve learned along the way in my daughter TiTi’s gluten-free journey. 1) What’s Lurking in the Turkey? Turkey is naturally gluten-free, but if you buy a pre-stuffed turkey, add brine, or fry this delicious bird, chances are the turkey now has traces of wheat in it. Your best bet to keep it gluten-free is to stuff the turkey with healthy fruits like apples. 2) It’s All Gravy...or is It? Where there is gravy, there is a thickener in the mix. To assure it’s gluten-free, make sure you or the host uses corn starch, which is naturally gluten-free. Also, beware of premade gravies. If you look closely at the label more than likely you’ll see wheat or barley as one of the ingredients. This can be quite troublesome to those who have a gluten allergy. 3) Push the Gluten to The Side Sweet potato and green bean casserole are among the most popular side dishes on the Thanksgiving table. But as with everything else, check the label on items like fried onions and cream of mushroom soup. There are actually gluten-free cream-based soups on the market. Stay clear of the gluten by checking them out in your local grocery store. There are also other side options such as cranberry sauce, mashed potatoes, and salads that are less likely to be filled with gluten. 4) Not All Crusts are Created Equal Decadent pies such as apple, pumpkin, or pecan are usually the showstoppers of the Thanksgiving Day feast. The pie filling is gluten-free for the most part. Just be sure to double-check the label. The crusts, on the other hand, are usually made from wheat flour or a derivative of it. It’s best to either find gluten-free graham cracker crusts
(YES, they do exist!) or choose a crustless dessert instead. 5) Above All Else, ASK QUESTIONS! I can’t stress this point enough. There have been many times that I scoped out a restaurant’s gluten-free options online or called them directly before making a final dining choice for my daughter and me. 1.) How is the food prepared? 2.) What ingredients were used? 3.) Was the food prepared in a dedicated gluten-free area? Those are the kinds of questions to ask if you’re eating out for Thanksgiving dinner or going to a family member’s house. Even better, bring a turkey day gluten-free dish that everyone can enjoy. As you can see, there’s no need to fret or feel left out while eating gluten-free during the holidays. Just some extra preparation, label reading, and questioning are all that’s needed. HAPPY EATING! ***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.
November 2021 • Special Needs Living
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V I C TORY L ANE C AMP
non-profit spotlight By: Aaron Olson
M E E T C R Y S TA L I N G R A M & A L E X M I L L S When Crystal Ingram connected with the Victory Lane community in 2017, she didn’t realize it would be the beginning of lifelong friendships for her daughter Ruby. Even more, she didn’t realize she would begin building her own lifelong friendships. The unique approach of Victory Lane takes families of children with special needs and families of children without special needs and teaches them to grow together through a summer camp environment. These connections develop all year long, and families support one another through the stresses and joys of life. Families of children with special needs are empowered and equipped, and families of neurotypical children discover useful ways to encourage their friends. From Camp Participant To Camp Coordinator
Crystal described her first camp session as life-altering. “It’s emotional, and beautiful, and raw. This ministry is changing lives.” As she and Ruby navigated post-camp life, they discovered they now had a network of friends who wanted to be a part of their lives. “Whether it is dealing with my daily frustrations or worries as a mother of a child with special needs or any other struggle Ruby or I have, I know I can reach out to anyone I met through Victory Lane and I know they would be there to help,” Crystal expressed. Crystal believes so much in the mission of Victory Lane she now serves as the Camp Coordinator. She uses her own experiences to help welcome new Victory Families into the camp sessions and create an environment that nurtures meaningful connections. Crystal also works to recruit Partner Families and provides them the training they need to come alongside Victory Families in ways that are helpful and positive.
46 Special Needs Living • November 2021
Alex’s New Friends
One example that Crystal points out when sharing about the transformational experiences that happen at camp is Alex Mills. Jamie and Jennifer Mills, Alex’s parents, were determined to find a camp which would allow Alex to fully participate, even though he’s bound to a wheelchair. “No matter what your disability is, they make every effort for each child to feel like a part of it. There was no standing off to the side just looking on,” explained Jennifer. “Alex enjoyed any activity that allowed him to be on a team with his peers. There was an entire day that we were in a training session that Alex got to spend with just his friends and other volunteers, and he almost didn’t want us to get done so he could stay with his new friends.” The Mills family also appreciated the connections made with the “Partner Families” (families without special needs). Jennifer shared, “The Partner Family that was assigned to us, Tiffani and Chad Pentecost, took to Alex as if he was a member of their family. One evening there was a tractor ride. Alex didn’t want us to go with him. He wanted Chad to go with him. They were there all the time offering help whenever we might have needed it. They would stay with Alex while we went to get our food. We actually got to eat hot dinners! Even the families that were assigned to other Victory Families would jump in and help if needed.” Finding Partners For The Journey
The Partner Families at Victory Lane find a depth in relationships
Jadyn and Aaron Trevor
Truman and Tiffany
Noah and Alex
Luke
where everyone can be themselves and let their guards down. The Pentecost family found a new richness in the friendships they’ve formed through Victory Lane. “Bringing Victory Families and Partner Families together is a way for us as Partner Families to understand that we are actually missing something in our lives, that Victory Families can give to us,” noted Chad Pentecost, Partner Family Dad. “When I first decided to become a Partner Family, I thought I was going to be the guy who helps out a Victory Family but when walking away from camp I realized that they helped me out more! Our daughter is now very interested in becoming an occupational therapist and Victory Lane has been a big part of her growth.” Even teens get involved with the connections happening at camp and year-long activities. Kenley Brown’s family began attending camp as a Partner Family in 2014 and she cherishes the
Skaar, Wendy, and Tucker
Ruby and Emmy
friendships she has made while attending camp sessions and other activities. “Victory Lane brings families closer together. It’s an amazing opportunity to develop relationships, be with your family, and just have a great time,” Kenley said. “It truly is an awesome experience, and I definitely look forward to it every year.” If you would like to learn more about Victory Lane please visit their webpage at www.victorylanecamp.org or by emailing camp director Crystal Ingram at crystal@victorylanecamp.org or calling 765-591-4191. 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.
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November 2021 • Special Needs Living
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