living
Special Needs
January 2021
Indianapolis & Surrounding Areas
ON THE COVER:
JENNIE STERN, JUSTIN REID & PETER SIMA
Inside: Down Syndrome Indiana Meet the Gossard Family – Receiving the Diagnosis of SeSAME Syndrome Five Unexpected Gifts My Daughter’s Cystic Fibrosis Has Given Our Family Meet Ashley Caveda and read her Ice Sled Hockey story Sponsor Spotlight: Children’s Dental Center Meet Kasey Peters and her son, Brayden Sibling Perspective: Braylee and Dawson Vicori Pioneer Parents: Denise Arland Inspirational Moments: You are not alone Local Events and More
CONNECTING - INSPIRING - EDUCATING - FAMILIES WITH SPECIAL NEEDS
2 Special Needs Living • January 2021
I M P O RTA N T
N UMBE R S 317-977-2375
317-257-8683
Arc of Indiana www.arcind.org
www.n2pub.com Turning Neighborhoods Into Communities © 2021 Neighborhood Networks Publishing, Inc.
AREA DIRECTOR PUBLISHER
Jamie McCabe jamie.mccabe@n2pub.com
ASK: About Special Kids, Inc. www.aboutspecialkids.org 317-232-7770
Indiana Governor’s Council for People with Disabilities (GPCPD)
800-609-8448
Autism Society of Indiana
877-241-8144
Blind and Visually Impaired Services (BVIS)
812-855-6508
Indiana Resource Center for Autism
800-545-7763
Bureau of Developmental Disabilities Services (BDDS)
317-233-1325
Indiana State Department of Health
844-446-7452 800-545-7763
Bureau of Rehabilitation Services (BRS)
Indiana Statewide Independent Living Council (INSILC)
855-641-8382
Indiana Works
800-332-4433
INSOURCE http://insource.org/
Deaf and Hard of Hearing Services (DHHS) DHHSHelp@fssa/in.gov 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
911
Emergency
844-323-4636
Family Voices Indiana www.fvindiana.org
800-545-7763
First Steps
574-234-7101
IN*SOURCE www.insource.org
317-232-0570
Indiana Department of Education: Office of Special Education www.doe.in.gov/specialed
317-233-4454
Indiana Family and Social Services Administration (FSSA) www.in.gov/fssa/index.htm
1-800-772-1213
Social Security Disability Insurance (SSDI)
877-851-4106
Special Education Questions
317-871-4032
United Cerebral Palsy Association of Grater Indiana
800-545-7763
Vocational Rehabilitation Services (VR)
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.
January 2021 • Special Needs Living
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Sponsor I N D E X Neighborhood
Thank you to all the supporters below who have chosen to partner with Special Needs Living Magazine. Because of them we are able to mail this publication to you free of charge each month!! They are delighted to help you with any of your needs. Please let us know if there is a company or organization that supports the Special Needs Community that you would like to recommend - Jamie.McCabe@n2pub.com ABA & COMPREHENSIVE SERVICES K1ds Count Therapy (317) 520-4748 ABA SERVICES Autism Center for Enrichment (317) 436-7080 Mindful and Modern ABA Therapies (317) 827-7777 The Indiana Institute for Behavior Analysis, LLC (317) 388-8131 ACCESSIBILITY PRODUCTS AMRamp (260) 519-0101 ASSISTANCE DOG Indiana Canine Assistant Network, INC. (ICAN) (317) 250-6450 ATTORNEY-WILLS/TRUSTS/ ESTATE PLANNING Law Office of Elizabeth A. Homes LLC (317) 660-5004 DENTAL CARE Children’s Dental Center (317) 842-8453
4 Special Needs Living • January 2021
FINANCIAL Munder Financial James Munder (317) 238-6621 WestPoint Financial Group Gordon Homes (317) 567-2005 FUNCTIONAL MEDICINE Wholestic Nutrition (812) 320-9954
MOBILITY / ACCESSIBILITY CYA Mobility (317) 530-2541 NEUROFEEDBACK THERAPY Indy Neurofeedback (317) 888-8500 PEDIATRIC THERAPY Wee Speak (765) 446-8300
GYMNASTICS Body by GymRoots Studio (317) 579-9300
REGENERATIVE MEDICINE/STEM CELL THERAPY Destination ReGen (317) 522-1980
HEALTH & WELLNESS LifeVantage - Team Richards Kristin Richards (317) 698-5264
SPECIAL EDUCATION CONSULTING IEP Services, LLC. Sheila Wolfe (317) 573-9610
Ritello Clifton Herbert (661) 317-6157
SUPPORT SERVICES Easterseals Crossroads (317) 466-1000
INSURANCE: AUTO/HOME/LIFE State Farm Josh Fields (317) 875-0013
PUBLISHER’S NOTE Finally a New Year!
At the end of 2019, I was so looking forward to the year 2020. What a year we all have had; it most certainly has not been an easy one. I have cried more and been more overwhelmed than I have ever been in my whole life to this point. I have also grown more and accomplished more in 2020 than in any other year. I am reminded that in pain there is a purpose, through our struggles we grow. I have to remind myself to hang on, it will get easier! I can identify with the challenges this last year has brought to all of you, and you can be assured that I fought hard to get this magazine out to you knowing that there was a huge need to help provide hope, inspiration, and encouragement to everyone in the special needs community. After this year, you can bet that I am more excited for the year 2021! We all need a fresh start and a new year helps set the stage for that. Let’s all take a deep breath and think of how far we have come. Let’s remember to give ourselves some grace and get excited about the future because the best is yet to come. Thank you to all who contributed your story in this month’s issue; I have been so moved reading each and every one. We all have a story and you just never know who in the community will be moved by sharing yours. Stories are meant to be shared to inspire others and help give hope for the future. Special Needs Living is designed for individuals with special needs and families who have a child with any type of special need,
whether psychological, behavioral, emotional, or physical. Stories will largely be written by our readers. It is for you, by you, and meant to connect you. Oftentimes we can feel alone and isolated in the world we live in today. The stories shared here will give hope, inspiration, and encouragement, perhaps even shift your perspective. If you have a story you would like to share, you are welcome to email us at SpecialNeedsLivingIndy@n2pub.com or check out our Linktr.ee/ Community.Stories to view some of the story template options. Finally, a huge “thank you” goes to all the supporters helping to make Special Needs Living possible monthly. If you would like to be involved in any way, or for more information on how you can support or sponsor, please email me Jamie.McCabe@n2pub.com. You can follow us on our Facebook page: Special Needs Living magazine – https://www.facebook.com/ specialneedslivingmagazine to view our monthly digital versions and to keep up with events, stories, and things we are looking to add to the magazine. We hope you enjoy the January issue of Special Needs Living. We welcome feedback and are excited to bring this magazine and resource to you each and every month! Happy New Year! Have a wonderful start to 2021! Your Publisher, Jamie McCabe 248-882-8448 Jamie.McCabe@n2pub.com
January 2021 • Special Needs Living
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MEET THE Special Needs Living
TEAM
JAMIE MCCABE Publisher & Area Director
BRITTANY LOWE Event Executive
HEATHER GREGG Photographer 21 Vines Photography
LEAH PARKS Knightingale + Willow Photography
MARIA SMIETANA Editor & Writer
WRITER & CONTRIBUTORS
CARLA MILLER
DEANDRA YATES
ERIN BOAZ
LISA MONGE
AARON OLSON
PAUL HATHCOAT
ANGELA ARLINGTON
SHANNAN PENAFLOR
SHEILA WOLFE
6 Special Needs Living • January 2021
LAURA SPIEGEL
MAUREEN MARSH
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THIS MAGAZINE IS FOR YOU - BY YOU
TO SUPPORT & CONNECT YOU HERE IS HOW YOU CAN BE INVOLVED
REFERRAL PROGRAM
We have a referral program that pays a $100 bonus to anyone who personally connects us with a business or organization that chooses to support Special Needs Living. Please let us know if there is a company or organization that supports the Special Needs Community that you would like to recommend – Jamie.McCabe@n2pub.com.
HAVE A STORY TO SHARE
Would you like to share a story in an upcoming issue of Special Needs Living? We want to hear from you! To share a story or to nominate someone else to be in an upcoming issue of Special Needs Living, email us your story ideas or nominations to SpecialNeedsLivingIndy@n2pub.com. To view several story options with quick links or to answer questions and upload photos go to Linktr.ee/Community.Stories.
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.
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.
LET’S GET SOCIAL TO KEEP UP TO DATE WITH ALL THINGS HAPPENING WITH SPECIAL NEEDS LIVING UPCOMING EVENTS/SOCIALS/GATHERINGS STORIES & HIGHLIGHTS WAYS TO BE INVOLVED
Follow us on Facebook@specialneedslivingmagazine.
Do you run a non-profit or know of one that supports the special needs community? Email us at SPECIALNEEDSLIVINGINDY@N2PUB.COM.
HIGHLIGHTING ALL SPECIAL NEEDS BUSINESSES FOR ADVERTISING:
Do you run a business that supports the Special Needs Community and are looking to advertise and support the Special Needs Living magazine? Email: Jamie. McCabe@n2pub.com.
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).
January 2021 • Special Needs Living
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THE ABC’S OF IEP’S I struggled this month deciding what to write about. Initially, I was planning on By Sheila Wolfe continuing with information on how to create IEP Services an appropriate individualized education plan (IEP). Instead, I felt most parents are probably struggling with the effective education of their child with a disability during “COVID times.” Heck, parents of non-disabled kids are struggling! This month, we will address the responsibilities schools have to children with disabilities under these very unusual circumstances.
There are many helpful websites with information regarding the continued responsibility of schools to provide a free appropriate public education (FAPE) even during a pandemic such as COVID-19. The U.S. Department of Education’s site has a tab devoted to issues about coronavirus at https://www.ed.gov/coronavirus. There is also information specific to children with disabilities at http://sites. ed.gov/idea (search “COVID” at the top of the page). One of my favorite sources of information for parents regarding special education law is the COPAA (Council of Parent Attorneys and Advocates, Inc.) website www.copaa.org.
Do you need help getting your child with special needs the services they NEED and DESERVE at school? Professional Parent Advocate with 20 Years Experience Specializing in Developing IEPs that WORK Experienced in All Disability Categories Autism Expert Helping families receive a meaningful education for their children in public schools
IEP IEP Services, Services, LLC LLC Integrated Educational Programming
Sheila A. Wolfe Special Education Consultant
sheilawolfe@sbcglobal.net Please email for more information.
8 Special Needs Living • January 2021
It is my opinion, and the opinion of COPAA, that schools must continue to provide FAPE during COVID-19. The U.S. DOE has issued some information indicating that schools do not have to provide services to students with IEPs if the school is not providing services to students in general education due to school closings during the pandemic. However, there is nothing in the law that would allow the pandemic to supersede existing regulations. Schools MAY deliver education in new and creative ways including many virtual options and by using assistive technology. If appropriate, students with special needs may be able to receive instruction through virtual classrooms, direct online instruction provided through interactive video, direct instruction provided in the home or another location, other computer-based instruction, as well as a combination of instruction and paper-worksheet or computer-based practice. The key to any instruction choice is its appropriateness for that student and compliance with the IEP. Many students may find it difficult to receive instruction through any computer-based method because of accessibility issues. This may be due to mobility issues, gross motor or fine motor issues, attention issues, cognitive delays, etc. Schools and families will need to work hard to come up with viable options for appropriate student instruction based on each student’s individual needs and abilities. I have received many parent complaints about services contained in a student’s IEP not being delivered by the school due to COVID-19. For example, perhaps a student is to receive 45 minutes of direct speech services from the SLP each week. The school is providing 15 minutes of interactive video instruction during “e-learning” due to COVID-19 restrictions or closings. Obviously, the student is missing 30 minutes per week of necessary services. Under these types of circumstances, I encourage parents to document, document, document. If your child is not receiving services contained in their IEP in a manner that is meaningful, or in the same amount or duration contained in the IEP, you may be entitled to compensatory services from your school. It is important in every program (COVID or not) to continue to measure progress throughout the school year. Compensatory services, as well as Extended School Year (ESY) services, may be necessary to make up for what students with special needs miss due to changes in programming and service delivery during this pandemic. Providing children with a quality education during these difficult times is not an easy task … for schools or for parents. Everyone needs to remain flexible and creative as we try to come up with plans that will deliver meaningful education to our students with special needs. Some students will thrive with virtual learning options. But for those vulnerable students that do not, parents need to be strong advocates when working with their school. We do not know when things will get “back to normal” so if Sheila A. Wolfe a circumstance is at an impasse, seek IEP Services, LLC professional help without delay.
sheilawolfe@sbcglobal.net
Addressing Autism From A Functional Medicine Perspective TELEMEDICINE PRACTICE Functional medicine is ideal for helping individuals with ASD as the body is viewed as one integrated system rather than a collection of independent organs. By understanding and treating the body as a whole, functional medicine can help various ranges of abnormalities such as gut imbalances and detoxification issues common in individuals with autism. (Such anomalies often cause the behavioral and mood symptoms of autism.) There is no reason you or your family should endure any additional stress. We understand autism comes with enough complications and trying times, and now settling for mediocrity does not have to be your future. Gain the knowledge and expertise to help yourself and others overcome their optimum health!
Join our Addressing Autism From Functional Medicine Perspective Program and understand the mind body and spirit connection!
Dr. Anass Sentisi, HCHC, CFMP Founder and Medical Director Dr. Stephen Pfeifer, CHNP, CFMC Medical Director
Wondering If Wholestic Nutrition Is Right For You? Schedule a FREE Discovery Consultation with a highly trained TELEHEALTH coach!
317-429-0111 • www.wholesticnutrition.com 621 Fort Wayne Ave, Indianapolis, IN 46204
January 2021 • Special Needs Living
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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
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impact supporters
THANK YOU to Our 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, engagements, maternity, newborn lifestyle, cake smash, headshots, extended family sessions and more!
Matt Hadley – AP Engineering & Consulting, Inc.
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.
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.
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Josh Fields, State Farm® Insurance Agent 317-875-0013 insurewithjoshfields.com Our team has 21+ years combined experience! January 2021 • Special Needs Living
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meet william gossard By Maria Smietana
Receiving the Diagnosis of SeSAME/EAST Syndrome When Abigail (Abby) and Brian Gossard brought home their first child, a baby boy named William, they only knew that his initial hearing test was inconclusive. “As we left the hospital, all we knew was that he had an unconfirmed hearing test – meaning they couldn’t say he for sure had hearing loss but couldn’t say he could hear,” Abby recalled. When William was 12 weeks old, an ABR (auditory brainstem response) test was done. The ABR test reveals whether the inner ear, called the cochlea, and the brain pathways for hearing are working. The ABR test is often used in babies and young children who can’t undergo a typical hearing test. William’s results were again inconclusive, but when the test was repeated under sedation, it was confirmed that he did indeed have profound hearing loss.
Now, the puzzle pieces from the various genetic and laboratory tests could be put together, and William was finally diagnosed with EAST syndrome (Epilepsy, Ataxia, Sensorineural hearing loss, and Tubulopathy), more commonly known now as SeSAME (Seizures, Sensorineural deafness, Ataxia, intellectual (Mental) disability, and Electrolyte imbalance) syndrome. Though having a diagnosis after so many years of uncertainty was comforting for the Gossards, there was little that changed on a practical level. William’s symptoms were already being treated with the best possible therapy and medication, and there is no cure for EAST syndrome.
The following day William started having seizures, and shortly thereafter, his parents learned that his muscle tone was really weak. “So, for four years, we treated the hearing loss with hearing aids (he received his first set at 6 months and responded well to them) and music therapy to specifically help with his speech,” Abby said. “We did physical and occupational therapy for his [muscle] tone and fine motor issues, and then treated the seizures with meds.” When he was 4, William had a particularly bad seizure that lasted 15 minutes, which resulted in an ambulance ride to a local hospital in Lafayette, where the Gossards live. He was transferred to Peyton Manning Children’s Hospital in Indianapolis. His neonatologist, Dr. Luis Escobar, decided to request more genetic testing. Dr. Escobar had done some previous genetic testing on William, but the focus had been on possible mitochondrial disease. With this hospitalization, the Gossards also learned about William’s kidney issues for the first time — “basically his kidneys filter out potassium and magnesium really quickly and he needs supplements to keep his electrolytes up, Abby said.”
“We’ve had to learn to be flexible and patient,” Abby said. “We’ve also had to lean on our family and ask for help with taking care of our other son (James was born when William was 2) during those long hospital stays that William goes through.”
12 Special Needs Living • January 2021
If the diagnosis brought any surprises for the Gossards, it was how incredibly rare EAST syndrome is. “We know of one other family with a child that has the same diagnosis as William,” Abby said. “They live in the UK. We feel that the more open we can be about our [son’s condition], the better our chances of finding more families like us.” William is now 10, and his younger brother, James, will be 8 in January. They both go to Edgelea Elementary School, where William is in third grade and James in second. “Edgelea has a deaf/hard of hearing classroom that allows William to be with other kids in the district who also have (cochlear) implants and require some extra assistance,” Abby said. Like other special needs children, he has an individual education plan (IEP), and
much of his life outside of school is taken up with therapy. But in many ways, William is like any typical kid. He loves tater tots, cheers for the Purdue teams, and is a big fan of Ben and Holly’s Little Kingdom. His favorite subject in school is math, and when he grows up, he wants to be a chef, a doctor, and a firefighter — big dreams, just like a lot of 10-year-olds. William’s outgoing personality has helped him fit in and build his social skills. “He’s usually talkative, and can be really funny and silly,” Abby said. “He’s more reserved when he’s in a new situation. He has friends in every class who he adores and who adore him. And he’s a typical older brother — tattles on James and tries to keep him in line. James will mess with William and the two will wrestle! In the photos, they were giggling going down the slide into the leaves and pushing each other on the swing. It’s been really fun to see their friendship grow.” Abby can’t say enough good things about Hear Indiana, a not-forprofit dedicated to providing hearing and spoken-language services to hard-of-hearing and deaf children. “Every week, we meet with our beloved speech therapist who has become an addition to our family (she’s even dug through the cushions of my furniture looking for a cochlear implant!),” Abby laughed. During the pandemic, William has had his appointments via teletherapy. “We’ve visited their audiology department for multiple hours in the hearing booth, testing and adjusting implants. Not to mention, in every hard situation – school conversations, managing William’s IEP, conversations with surgeons about re-implantation surgeries, and just advice on behaviors — we almost always involve the team at Hear Indiana.” Hear Indiana also offers parent education events and runs the only camp in Indiana for kids with hearing loss. “Talk about amazing,” Abby said of the camp. “The staff deals with all the cochlear implants and hearing aids, including keeping them dry when the kids go swimming.” William also had surgery for Cochlear Implants in 2017 and used Hear IN’s services (audiology, speech therapy, and family support) since his implantation. Dealing with the emotional ups and downs of raising a special needs child is very familiar to Abby and Brian by now. “Stay positive but also have a safe place to express other emotions,” they advise. “Everyone needs to know they have a place for support without judgment. And when anyone offers solutions, suggestions, or guidance, it should be viewed as helpful instead of judgmental. That goes both ways!”
and then got enough courage to put bows in their manes. By September, he got on a horse and rode for the very first time to celebrate his dad’s birthday! A few weeks later, we started doing physical therapy on the horse, so he’s riding two days a week, and it’s his favorite place to go now. He’s in heaven.” William wasn’t the only member of the Gossard family who had a breakthrough this summer. A few years back, when it became clear that taking care of a special-needs child was a huge job, Abby decided to leave the workforce. But she missed the intellectual challenge of working and the satisfaction of contributing to the family income, so she became a consultant for a nutrition and weight loss company, something she could do from home. It worked out fine until 2020 hit with full force, and she understandably found herself a little overwhelmed. Then some of her fellow nutrition coaches encouraged her to hand off all the things she thought she “should” do and focus instead on the things only she can do for her family and her business. “Ask for help and don’t feel guilty,” is her new mantra. She hired a cleaning lady, experimented with meal delivery, and gets someone to watch the boys so she can work on her business, or take her hubby on a date. “Don’t be stressing over house cleaning, laundry and dinner,” she now advises other women. “It’s the best darn decision I ever made!” 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
Purchase an ICAN 2021 Calendar!
• Adorable images of ICAN pups-in-training! • PAWfect for holiday gifts and stocking stuffers! • Your purchase will help ICAN train service dogs for people with disabilities. To learn more, visit icandog.org
Photo credit: Liz Kaye
Cold Noses. Warm Hearts. Dogs are amazing creatures. Their gifts to humanity are loyalty, love and service. For over a decade, ICAN has been successfully placing dogs into
Like most kids, William isn’t always crazy about trying new things when they are presented to him. Such was the case with equine therapy. “His occupational therapist, Beth, tried for several years to encourage William to participate, but he was too afraid to even touch the horses,” Abby said. This past summer, he got to a point where he was at least willing to visit the barn at Wee Speak Therapy. “We met the owners and the volunteers, watched the other kids ride, and slowly he progressed each week towards the horses. He would paint while the horses stood still,
meaningful relationships with children and adults who have physical and developmental disabilities and may need assistance with daily activities. We also place dogs into special needs facilities throughout Indiana.
To learn more about the type of service dogs we place, please visit icandog.org or call 317-250-6450
5100 Charles Court | Suite 100 Zionsville, IN 46077
www.icandog.org January 2021 • Special Needs Living
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Children’s FA M I LY D E N TA L
14 Special Needs Living • January 2021
sponsor of the month By Maria Smietana
The prospect of taking a child to the dentist for the first time can be daunting for any parent, but it can be especially tough for parents of a special-needs child. It’s helpful to choose a pediatric practice, and even better if the dentist(s) has had significant additional training in pediatric dentistry. Beyond that, it’s wise to ask how much experience the dentists and other staff members have had with special-needs patients.
Dr. Michelle Edwards
The mission of Children’s Dental Center, located in Fishers, is to help families set the stage for a life-long commitment to oral health in a friendly and approachable manner. Dr. Michelle Edwards, the founder and owner of the practice, does that by creating an atmosphere of promoting trust and confidence in young patients that will have lifetime results.
Edwards grew up in Munster, IN, around multiple family members who worked in the medical and dental fields. After obtaining a BA in psychology at the University of South Carolina, she completed her DDS and an MS in pediatric dentistry at the IU School of Dentistry. Edwards additionally completed a two-year residency at Riley Hospital for Children, after which she served as an associate at a dental office on the south side of Indianapolis. She opened the Children’s Dental Center in 2007. Dr. Rebecca Rafla, a native of Louisville, KY, joined the practice in July of 2020. A graduate of Samford University in Birmingham, AL, where she obtained a BS in music, Rafla earned her DMD at the University of Kentucky. She is currently finishing up a two-year residency at Riley Hospital Dr. Rebecca Rafla for Children and will earn a master’s degree in pediatric dentistry from the IU School of Dentistry. She is thrilled to be part of the Children’s Dental Center and feels right at home in Indianapolis. In her free time, Rafla can be found performing as a jazz vocalist around central Indiana. Edwards wants prospective patients to know that her practice “takes a very conservative and preventative approach to dentistry, with quality of care always top of mind. We have a ‘if we wouldn’t do it to our own children, we will not do it to yours’ philosophy,” she stated. Getting kids to practice healthy habits like brushing their teeth is as important for special-needs kids as for any other kid. “Practice makes perfect,” Edwards advises. “Role-playing healthy habits at home can make a world of difference for a successful dental visit.”
In addition to her role as a medical professional and business owner, Edwards is a wife and mom. She is married to Dr. Michael Edwards, a periodontist. The two met in dental school. They have three children — Jackson, Alexis, and Lila. “As a family, we attend many community events run by the City of Fishers, such as Girls on the Run, Fishers Farmers Market, and Boo Bash,” Edwards said. “We love supporting the Ronald McDonald House with pop tab drives and snack drives to refill their pantry. We also dedicate one night to cooking dinner for the families staying at the house.” Business Contact Information Children’s Dental Center 9885 E. 116th St., Ste. 100, Fishers, IN 46037 317.842.8453 www.babytoothcenter.com Facebook.com/BabyToothCenter Ashley Watkins ashley@babytoothcenter.com What is a Therapeutic Dental Visit? For Children’s Dental Center, a therapeutic dental visit provides the tools to use in future dental appointments and establishes a healthy at-home dental hygiene routine for your special-needs family. Our customized therapeutic dental sessions prepare you, the parent, and your child to work through any fear and anxiety about visiting the dentist. Our goal is to create positive experiences one visit at a time. Children’s Dental Center works with most dental insurances and Medicaid. To book an appointment with Dr. Edwards or Dr. Rafla, please call 317-842-8453.
Each month we will highlight and introduce one of the supporters that helps make this magazine possible. Please keep them in mind and reach out if ever you have questions, they would love to help.
January 2021 • Special Needs Living
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16 Special Needs Living • January 2021
M E E T KASEY PETERS & HER SON,
brayden By Aaron Olson
Kasey Peters and her son, Brayden, live in Westfield where Kasey works as a nurse. During the last part of Kasey’s pregnancy, her vehicle was hit by another driver who failed to stop at an intersection. As a result, Brayden did not get a sufficient amount of oxygen to his brain, a condition known as neonatal hypoxic-ischemic encephalopathy. Due to this condition, Brayden developed cerebral palsy.
Brayden is upbeat, social, and always seeking out stimulation, but completely dependent on his caregivers, and needs assistance with nearly every aspect of daily living. Being non-verbal and having limited mobility due to tightness in his lower limbs and low tone in his trunk presents a number of difficulties for both Kasey and his caretakers. While these issues might seem daunting to most people, Kasey says having a good support network and the right perspective is key. Kasey had a caregiver who would pick him up before she went to work and drop him off when she got back. Fortunately, due to her background as a nurse, she was recently able to become Brayden’s full-time nurse caretaker. Her support network also gives her the time she needs to recharge. With her limited free time, Kasey enjoys going on date nights with her significant other, working out, visiting friends, and sometimes doing nothing at all. Brayden has also inspired Kasey to become a nurse practitioner; she will begin her coursework in January. Brayden is energetic and enjoys almost anything that brings some form of stimulation. Whether it’s something as common as listening to music or something more complex, like playing a game, Brayden is almost always laughing and full of excitement. One game he is particularly fond of is a version of “peek-a-boo� where his caretaker will stand behind the door and move it ever so slightly. He finds the noise from the door hilarious. Most of all, Brayden loves people and will spend time with people over just about any other activity including movies, his iPad, or music.  Brayden currently attends the Monon Trails Elementary Life Skills classroom. When it comes to maintaining the right perspective, Kasey believes situations like these can either break a person or they
can build a person, and in her case, letting her situation break her wasn’t going to help Brayden. Kasey believes in focusing on the many positives, like the progress Brayden has made. When asked about her best moment with Brayden, Kasey finished with “Honestly, I don’t have a best. His laughter is infectious, his cuddles make me feel loved despite his inability to verbalize it, and his smile lights up everyone’s heart.�
Would you like to share your story or nominate someone else to be in an upcoming issue of Special Needs Living? Email us at SpecialNeedsLivingIndy@n2pub.com.
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18 Special Needs Living • January 2021
By Paul Hathcoat
pastor’s What would it take for you to feel comfortable in your local church? What would it take for you to feel confident that you or your loved one who is living with a special need is known, loved, and supported skillfully and with care when they are at church? What would it take for you to recommend the church that you belong to, to other families living with disabilities in your sphere of influence? Or are you already there? Those are the questions that are being asked in a few communities around you, but not in nearly enough as I have found. Far too many families either do not get a chance to answer those questions or have negative answers when they do honestly respond. Why is that? Where are the developed and inclusive supports for people living with disabilities within the church? If our schools, businesses, government buildings, and even sports leagues are not only accommodating but are genuinely welcoming individuals with disabilities, then why are so many churches not doing the same thing? Although I love to ask questions, I feel obligated to answer some of them as well. After all, to be a finder of fault is fruitless unless one attempts to be a solution contributor as well. I pray that this letter asks these important questions and in the following months, provides some possible answers as well. My goal would be for all of us to celebrate the churches out there who have seen the value in offering “Special Needs” ministries and encourage and inspire the ones who are not. First, let us make known what the Bible says. 1 Corinthians 12:18-23a says this “18 But our bodies have many parts, and God has put each part just where he wants it. 19 How strange a body would be if it had only one part! 20 Yes, there are many parts, but only one body. 21 The eye can never say to the hand, “I don’t need you.” The head can’t say to the feet, “I don’t need you. 22 In fact, some parts of the body that seem weakest and least important are actually the most necessary. 23 And the parts we regard as less honorable are those we clothe with the greatest care” (NLT). So, there is in fact a biblical mandate to recognize and honor those
in our communities who are unique and different; those with disabilities included. What the world may call weak and unimportant at times, God would call the “most necessary.” Knowing that fills me with more questions but also gives me ideas. I believe that many churches, just like people, do not know where to start in interacting with people with disabilities. I believe that there are misconceptions about communication ability, behavior, risk level, intelligence level, and even need. In the churches I know that have thriving special needs ministries in Central Indiana and elsewhere, offering a ministry where people of all abilities are welcomed and supported started with just one passionate person speaking up. That’s it. I believe that one passionate and knowledgeable person in the world of disability can motivate an entire church to start caring spiritually for all people in their community. That is what happened in my church and that is what has happened at several others I have worked with. As this topic gets unpacked more in the coming months, I would ask those of you reading this letter to take stock. If you are a member of a local church, do they have a developed disability ministry? If yes, how can you help it evolve and who can you invite to be a part of it? If not, who is that one passionate and knowledgeable person that might get it started? Is it you? Next month I will discuss in more depth why so many churches have not yet developed a special needs ministry and how we might be able to help. Blessings! Author’s Notes: If you want to tell us about your church, or want ideas on how to get a SN ministry started, feel free to contact Paul Hathcoat. 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.
January 2021 • Special Needs Living
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Events provided by : Brittany Lowe Event Executive
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, including that children under 2 years of age should not wear a face-covering due to risk of suffocation; and any person with a medical condition, mental health condition or disability, which prevents wearing a face covering, are exempt. As long as COVID-19 is ongoing, there is a possibility that the events listed could be canceled or rescheduled, and places to go could be closed. Please confirm the event status and details listed below as event details may have changed since posting.
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: - 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 JACKSONVILLE JAGUARS VS. COLTS JANUARY 3, 2021 1:00pm Lucas Oil Stadium 500 S. Capitol Ave. Indianapolis, IN 46225 Accessibility Info: https://www.lucasoilstadium.com/attending-anevent/accessibility/ - All ticket windows are accessible and available seating options will be communicated by ticket office staff - Drop off/pick up for guests with disabilities on the southwest corner pull through location off of Missouri Street, or on the northeast side of the stadium, on Capitol Avenue by the Colts Pro Shop. - Certified sensory inclusive and offers sensory bags that can be obtained from the guest services kiosk located behind section 121 - Staff with sensory awareness training - Download the free KultcureCity app or 317-262-8600 for more information about sensory inclusivity - Designated quiet space - Accessible amenities in restrooms - Assistive listening devices - Concession stands are accessible and large print menus are available upon request - Assistive animals are welcome
20 Special Needs Living • January 2021
JANUARY 25, 6:30 P.M. FREE VIRTUAL WORKSHOP – SPECIAL NEEDS PLANNING: LEGAL AND FINANCIAL ISSUES, GOVERNMENT BENEFITS AND EMPLOYMENT
Presented by: Gordon Homes, CFP, CLU, ChFC, CASL, Special Care Planner and Parent, and Elizabeth Homes, MBA, J.D., Special Needs Attorney This workshop will cover Guardianship and Supported Decision Making, Special Needs Trusts vs ABLE Accounts, Trust Funding, SSI, SSDI and Adult Child Benefits, Disability Medicaid, Waivers and Medicare, and the impact of Employment. Q & A to follow the presentation. Hosted by: Dr. Cathy Pratt Indiana Resource Center for Autism Indiana School Mental Health Initiative Indiana Institute on Disability and Community Sign up here https://www.iidc.indiana.edu/irca/what-we-do/online/ family-support-webinars.html AUTISM PARENTS’ SUPPORT GROUP OF INDIANA (Facebook) FREE Virtual Weekly Meetings (Google Meet) SATURDAYS 11AM–12PM (last Saturday of the month – Fun and Games 11am–12pm) https://www.facebook.com/groups/ autismparentssupportgroupofindiana/ INDIANAPOLIS ZOO JANUARY 18 9am–4pm Free admission with a donation of non-perishable food item for Gleaners Food Bank. Indianapolis Zoo 1200 W. Washington St. Indianapolis, IN 46222 https://www.indianapoliszoo.com/events/ - - - - - - - - -
Accessible parking Fully accessible ramps Low-grade slopes Entrances with ramps Box office ticket accessible window Accessible picnic tables Two rides available without leaving wheelchair (carousel and skyride) Signage with descriptions, videos with captions Service animals on leashes are permitted at the zoo
events $5 FIRST THURSDAY NIGHTS JANUARY 7 4–8pm Children’s Museum 3000 North Meridian St. Indianapolis, IN 46208 https://www.childrensmuseum.org/visit/calendar/view/457/2021-01-07 - Provides a sensory map that identifies areas that are sensory-heavy, as well as those that may be less stimulating - Social narratives that show photos of some of the areas that may be appealing and areas that might be over-stimulating - Visual checklist packet that includes instructions, picture cards, and a template to make a schedule for the day - Barrier-free access - Complimentary ticket for therapist/caregiver - Emergency red phones/first aid - Deaf and hard of hearing services - Mobility services - Sensory map available
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WEBINAR: INTRODUCTION TO THE FAMILY SERVICES WAIVER JANUARY 11 6:30pm https://www.iidc.indiana.edu/irca/what-we-do/online/familysupport-webinars.html Presenter: Â Rachel Deaton, B.A. Area Support Coordinator, Autism Society of Indiana The presentation will provide an overview of the Family Services Waiver. The workshop will cover how the application process works and which services are offered with the Family Services Waiver.
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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www.autismenrichment.com (317) 436-7080 | info@autismenrichment.com January 2021 • Special Needs Living
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5
By: Laura Spiegel – Paint Her in Color
UNEXPECTED GIFTS MY DAUGHTER’S CYSTIC FIBROSIS HAS GIVEN OUR FAMILY
“When can I stop doing my treatments?” my daughter asks suddenly. I am consumed with hooking up her nebulizer and am caught off guard by her question. “When there’s a cure for cystic fibrosis.” I pause. “And I think that’s going to come one of these days.” “Maybe it will be on my birthday,” she says as she picks up a book. Her birthday is in three months. She will be 7. “That would be something, wouldn’t it? You’re my brave, strong girl, and I love you with all my heart.”
And yet. There is a beauty to our days. An overwhelming sense of what matters and what doesn’t. What’s worth it and what’s not. In addition to its grief, a life with cystic fibrosis has brought my family an unexpected ability to nurture the blessings alongside the battles. Here are five unexpected gifts that this experience has given me. 1. Perspective – I used to sweat the small stuff. I strove for perfection in everything. Not surprisingly, the more I had, the more I wanted. These days, my priority is the health and liveliness of my family. We don’t have to be perfect; we just have to be here. Focusing on the bigger picture has helped me relegate the small stuff to the “junk drawer” of my mind. Every now and again, I’ll open it up and play around. But most days, there’s only so much room in my head for this kind of stuff. As both my daughter and her older brother grow, I want to teach them the same. It’s not about the grade. It’s not about the trophy. It’s about enjoying the experience and each other. 2. Purpose – For me, a well-lived life hinges on where I spend my
“You’re my mommy,” she replies evenly. “And you smell.”
As a full-belly laugh builds from deep within, it hits me. This exchange represents my daughter to a “T.” Her inquisitiveness. Her humor. Her hope in spite of it all. A life with cystic fibrosis can be filled with uncertainty, frustration, and fear. As a mother, I’ve experienced more lows in the last seven years than in the thirty years prior. I worry. I fret. My heart aches to think of the disappointment, the loss my daughter may one day feel. I would in a heartbeat give my life for her to be free from the cruelty of this disease.
22 Special Needs Living • January 2021
time and with whom I spend it. Nearly five years ago, I lept off the corporate ladder after realizing that I wasn’t where I was meant to be. Since then, I have soaked up time with both of my kids and have connected with hundreds of parents of other children living with special medical, developmental, or behavioral needs. Together, we laugh, we cry, and we search for some semblance of control. Above all, we celebrate the strength within us all. In this community, I have found my purpose. And one day, I hope to help my kids find theirs. 3. Hope – If I could have one wish, it would be for a cure for
cystic fibrosis. But until that happens, I will continue to put a
huge amount of trust in the medical and scientific communities. New iterations of drugs that help address the genetic cause of disease? Yes, please. Gene editing in the future? Bring it on. So many men and women work hard every day to help my daughter live a long, full life. Thank you for giving my family hope. 4. Faith – I am raising my children with faith. My son recently told
me that in heaven, all the scary movies are allowed. “Because when you go to sleep, God holds you in his giant hands so you’re not scared.” As I put both my son and my daughter to bed each night, I remind them of how thankful I am that God gave them to me. And I know that we are deeply blessed.
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5. Beauty – How could this not make the list? When I see my
daughter digging for worms under the watchful eye of her brother. When I feel the warm touch of her hand. When I hear her singing as she tries to out-swing her shadow. When she races after bubbles, twirls in her tutu, and cruises down the street, streamers flying. This life is beautiful to me, exactly as it is. To all you moms out there, I hope that amidst the hard times and uncertainties, you too find moments of thankfulness, big and small. You may not always walk an easy road, but you are strong. Your kids are strong. And you are doing a good job. Calling all individuals with special needs, parents, grandparents – If you would like to share some inspiration with the community or nominate someone else to be in an upcoming issue of Special Needs Living, email us at SpecialNeedsLivingIndy@n2pub.com.
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siblings perspective By Erin Boaz
Meet
Braylee
& Dawson
Vicari
Braylee and Dawson Vicari have a very special bond that started 15 years ago. She brings a beautiful perspective of what it is like to be a sibling of a special needs brother. Did you know that in 2020, the Centers for Disease Control (CDC) wrote that one in 54 children are diagnosed with Autism? This data was collected in 2016. I think we can safely say that most people recognize the different dynamics autism can bring to a family. This month we are featuring the sibling perspective of Braylee Vicari and how her life has changed for the better because of her special needs brother, Dawson. It will highlight the impact Dawson has had on Braylee, the fun memories shared, challenges that have been overcome and the best part of being a sister to a child with special needs. Braylee is 15 years old and a tenth grader at Hamilton Southeastern High School (HSE). Dawson, 17 years old, is her big brother. He also attends HSE and is a senior this year. Dawson was diagnosed with Autism and Epilepsy around the age of 5. To complete their family, they have two younger siblings, Jeryn and LaNia. Jeryn, 13 years old, and LaNia, 12 years old, both attend Hamilton Intermediate High School. They live in Hamilton County and call iTown their home church. Dawson is also nonverbal, which for most people, makes it hard to connect or communicate. Not for Braylee. She explains that because of their special bond, they are able to communicate without words. How many 15-year-olds get to experience that type of relationship where words aren’t needed? Braylee shares that it doesn’t come without its challenges though. She is inspired by how he deals with the obstacles he is faced with and considers his greatest difficulties to be are communication and social interaction. One way Dawson’s way of being has impacted her life, especially during her high school years, is showing her how to be her true, authentic self. High school comes with different types of peer pressure. Dawson is a humbling example of what it means to be your true self. He has this ability to not be bothered by what other people think. He doesn’t react to the comments or opinions of others like typical teenagers do. He seems at peace with who he is.
24 Special Needs Living • January 2021
Braylee also highlights that Dawson is one of the hardest working teenagers she has ever seen. He has taught her that when she doesn’t have the option to change a situation, the one thing she can control is how she responds to it. Dawson has inspired her to make the best of what she is given, no matter the circumstance. Even though Braylee is only 15 years old, she is full of love and wisdom. When asked to share what advice she would have for other siblings of those with special needs, her immediate response was “please don’t ever be ashamed or embarrassed and always advocate for them.” She considers it an honor to watch after him and to communicate for him. She does this to help increase social interaction and Dawson also gets to be seen and heard in his own way because of Braylee. She concludes by saying, “love your sibling through the struggles because some they can’t control.” When asked about her favorite memory with Dawson, Braylee didn’t know where to start because there are so many. She enjoys spending time at the beach with him, going swimming, playing unified kickball together and having Friday night dates at Texas Roadhouse. Her parents love telling the story of when Braylee was a 1-year-old, she was told she could no longer go to Dawson’s speech therapy because she was saying his flashcards for him. In fourth grade, Braylee used “Cardinal School Dollars” towards Show ‘n Tell at school. She wanted to share Dawson’s gifts to the class so they could better understand what it means to have autism. She had Dawson show her classmates how he used sign language and his iPad to communicate. He stole the show with his jokes and the class was full of fun and laughter.
Do you have a sibling with special needs and would like to share your story & perspective in an upcoming issue of Special Needs Living? Email us at SpecialNeedsLivingIndy@n2pub.com.
A story Braylee can laugh at now, but wasn’t so funny at the time, was when she was in second grade. Dawson sweetly came to sit next to Braylee to give her a hug. As she leaned into him, Dawson swiftly pulled out a pair of scissors and cut her bangs. They also enjoy making fun TikTok videos together. The characteristic Braylee loves most about Dawson is his brave spirit. Naturally, he doesn’t want to disappoint anyone, so Dawson always finds a creative way to overcome any challenge. He’s so positive and Braylee shares that it inspires her to show up in her life with courage and optimism. A challenge for Braylee is that even though she is the younger sister, she has taken on the role to help and watch over him. She doesn’t really view it as a challenge though because she feels it has shaped her into the person she is today. She explains, “growing up with Dawson has given me the ability to connect on a deeper level with people. This is one of the reasons why I volunteer in the Special Needs ministry at church. I enjoy being around him and the special needs community.” Braylee concludes by sharing how much she loves having Dawson as her older brother and wouldn’t change a thing about him. January 2021 • Special Needs Living
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about Denise Arland pioneer parents in indiana By Angela Arlington
Denise Arland was working as an administrative assistant for the superintendent of Greenfield-Central Community Schools when she got pregnant with quadruplets. Denise reflects, “Little did I know all my interactions and relationships with school staff would play a BIG part in my future! It definitely helped as we got started in school.” It was 1994 and First Steps was not required to provide services in the children’s natural environment. There were only 16 kids in the program in Hancock County, so Denise’s sons made up 1/4 of the population being served. “We got developmental therapy for all four boys at home but had to take them to a center operated by Shares for their other therapies. Shares also ran a developmental preschool for the First Steps kids, so they attended that from about 18 months until they were 3.” Parents passed each other on the way in or out of the building, but didn’t really meet. “We did not get a chance to talk because we were in the therapies with our kids trying to learn from the therapists,” Denise recalled. It was at this time she became friends with another mother, Amy Borgmann. Denise and Amy sat on the local First Steps Council as parent representatives. “In those meetings, they talked about how nice it would be to have a group where families could actually meet and talk with each other. Amy and I both agreed this would be great, not realizing they wanted us to run it!” It was the beginning of a new role for Denise that would last for over 20 years. Her sons had different needs and diagnoses, and it was a challenge to balance life with four busy toddlers. “A couple of them got PT and OT. Eventually, they all got speech therapy for a while, but I believe that was not until they got to preschool. I remember having a speech therapist or two in First Steps, but it was very hard to find so we didn’t get a lot of that. Lucas’s needs were not as intense as the others, so his therapies dropped off the fastest. Diagnoses came at different times. Zach’s and Matt’s cerebral palsy was diagnosed around age 3. When they transitioned to public preschool, Jacob and Lucas had developmental disability diagnoses, but back then when they turned 5, they needed another eligibility category to keep an individual education plan (IEP). It was at that point that Jacob got his autism diagnosis, and Lucas had significant ADHD, so he qualified under ‘other health impaired’. So they all had IEPs throughout their school years.” “We started out as an organization focused on connecting families of young children to other families for support and encouragement,” Denise said. “That actually created our name,
26 Special Needs Living • January 2021
Families United for Support and Encouragement – FUSE.” It was 1996, and the support group had help from First Steps providers and the public school special education co-op. Between the two groups, they provided free space to meet, snacks, childcare, and even newsletter mailing. Denise took on the role of running the group meetings, and Amy provided support services and started the newsletter. Soon Denise would have another son, Nick, who was born in 1997 when the quadruplets were 3 years and 9 months old. Nick never needed any services.
them as I talk to them about their children, their disabilities, their successes, and their challenges,” she said. “I’ve established relationships that I will always treasure. Those parents and adults with disabilities have inspired me to be able to help my own children with their challenges. From them, I got the strength to keep going and not give up when things with my own kids got tough.” In 2019, Denise’s husband had a chance to move to Chicago for a job opportunity. Her youngest son was in college, while the quadruplets were still living at home. Three of the quadruplets receive services through the Medicaid Waiver. “What I learned through FUSE shaped my vision of their future and helped me to see that big things were possible, including independent living,” Denise said. “When we announced our move, they were 25 years old, and we gave them the option of staying in Indiana or moving with us. They all chose to stay in Indiana, so we figured out what their independent living situations would look like. It is so gratifying to say that they are all successfully living on their own!” All of her boys have managed through the pandemic with flying colors. Denise smiled, “When I think back, I see how important the empowerment has been, for us as their parents and for them.” During this time, people started calling Denise at home and asking questions, and FUSE was becoming more than just a monthly meeting of families. “We decided it would be a good idea to form a non-profit so we could raise funds to provide for our own needs and not rely so much on First Steps and the special ed co-op. A group of parents who were regular participants agreed to be the board of directors. We officially became a nonprofit in April 2000, exactly four years to the month we started our informal meetings!” FUSE has grown tremendously over the years. They operated with volunteer staff for ten years, and in 2006 began transitioning to paid staff with Denise as part-time executive director. In 2009 Amy became development director, creating the fundraising side of the nonprofit. FUSE is now operated by one full-time executive director and two part-time staff. The group gets funding primarily from individuals, community organizations, and companies that sponsor programs and fundraisers. Grant writing is done on a small scale. Each year FUSE has three large fundraisers so it can provide programs at little to no cost, and continues to evolve based on the changing needs of the people served. Denise explained, “Before we knew it, the kids we served as babies were adults! Now some of them are on their own, navigating adult systems and services, so we learned about those systems and continued to serve those young adults and their families. Mental health calls also increased as we worked with older kids and adults. In 2018, we adopted a new mission that reflects our evolution. Our new mission statement is, ‘FUSE empowers families and individuals with disabilities and mental health needs by providing information, training, support, and encouragement.’” FUSE changed Denise’s life both professionally and personally. Professionally, working in the nonprofit world made her life more fulfilling. She has met hundreds of families that she never would have met otherwise. “I have learned so much from each one of
More information about FUSE can be found at www.fuseinc.org or by calling the FUSE office at 317-462-9064. If you would like to be a part of this Pioneer Parent section 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?"
Elizabeth A. Homes, Esq., MBA ehomeslaw.com | 317-660-5004 elizabeth@ehomeslaw.com 10412 Allisonville Road, Suite 200A Fishers, Indiana 46038
January 2021 • Special Needs Living
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caregivers & healthcare corner By Lisa M. Monge, MSN, RN
r o f o r He … s r e i s Hoo d a o r b and A ifference! D a g in k a M rn Jennifer Ste
Welcome to the New Year! As we roll into the new year, it is beneficial to remind healthcare workers we have an ethical duty to be cognizant of those living with a disability. We, as an integrated health team of caregivers, must understand how much we can positively impact the quality of life for those living with special needs. According to the National Alliance for Caregiving and AARP, roughly 43.5 million caregivers provide care unpaid care to an adult or child in the last 12 months. Part of the mission of Healthcare Corner includes highlighting caregivers who go above and beyond their ethical duty as a healthcare provider and aide in the reduction of healthcare barriers for those with living with a disability. Jennie Stern is stellar example of just that! Jennie is a special education teacher at the Independence Academy of Indiana (IA) who pays it forward for the most vulnerable Hoosiers. The IA is the only state accredited private school serving adolescents on the autism spectrum. Students attending the academy will graduate with a fully accredited high school diploma. The IA allows for small student teacher ratios (8:1). Middle school students attending the academy are also fortunate enough to attend daily life and social skills classes and high school students partake in daily transition classes. In addition, to ensure optimal outcomes for each and every student, the IA has partnered with HANDS in Autism, SpeakIndy, the Arc of Indy and the Autism Society of Indiana, just to name a few. Jennie has been a part of this academy for nine years and works with upper elementary and middle school students. One of her favorite things about her student is to watch their growth and states: “So many students come to our school looking for a place to belong. It is so beautiful to see them connect with others and for many, have friends for the first time. I have learned to never underestimate the abilities of the students. They all have unique and amazing abilities”
28 Special Needs Living • January 2021
Justin Reid, Jennie Stern and Peter Sima
At the IA, Jennie regularly goes above and beyond her teaching duties. Jennie has coordinated a “girls’ lunch” for female students, taking time away from her own lunch or break times to create these fun events. According to the Autism Society of Indiana (2020), there are 4.5 times more common in boys than in girls. For this reason, there are typically a large number of male students compared to female students at the academy. By hosting the “girls’ lunch” Jennie enables the female students to feel special and included. Jennie also volunteers for the special needs prom each year. The director of the IA, Marisa Gill, could not say enough positive things about her teacher. She boasted how Jennie is creative in her teaching and finds ways to keep her students engaged. Marisa continued “Jennie is a remarkable woman, with a true passion for teaching and a heart of gold. She is tirelessly dedicated to our students and helping them to overcome their unique challenges. I have worked with Jennie over the past seven years and her kindness and thoughtfulness never ceases to amaze me. Jennie has a special way of connecting with her students and pushing them to reach their full potential.”
Teacher Appreciation outing in Nicaragua
Recess at IA
Art & Sue Stern at the IA Gala
Spirit week at IA
Not only does this Hoosier make a huge difference here in Indiana, she also has been on ten mission trips, serving the special needs community abroad. After graduating college, Jennie joined a team connected with the Nicaragua Resource Network (NRN). The team works with teachers, students, and families in a special needs program. They train teachers to work with the students and help parents connect and encourage them to support each other. Her first mission trip was to Nicaragua. After this initial trip, her teammates connected her with a church’s special needs ministry, she began serving in this ministry and has been continuing her work there ever since. Jennie demonstrates selfless service at the city, state and international level. She is a role model to those around her and an inspiration to her students, colleagues and to everyone she interacts with. Jennie has adopted her generous and noble ways from her parents. Her father, Dr. Arthur Stern, also lives and demonstrates a selfless and giving way of life to the most vulnerable population. Dr. Stern continues to serve over 33 years as an Emergency medicine physician and has also volunteers on several medical missions to Guatemala and once to Peru. He pays it forward to the Independence Academy and to the Nicaragua Resource Network. Dr. and Mrs. Stern sponsor two students in Nicaragua, including a special needs student. Their sponsorship provides the children with school tuition, uniforms, books, and meals. Dr. Stern also accompanies Jennie in her volunteer work at the local church prom for adults who have special needs. Jennie is very proud of her dad and how he as modeled his selfless service to others. She mentions her first mission trip was with him as a freshman in high school to Guatemala. Dr. Stern provided medical care to patients in the clinic while Jennie played with the local children. To ‘pay it forward’ to this very vulnerable population is the ultimate act
of kindness. Jennie and her family live everyday to knock down healthcare barriers and provide selfless service both at home and abroad. Within the special needs community, Jennie and her family have many different caregiver roles. Every single role is unique, important and improves the quality of life. Most importantly, however, makes each child and adult smile a little wider. The Independence Academy Serving students on the autism spectrum in grades 4-12 4701 N. Central Ave Indianapolis IN 46205 317-926-0043 https://www.iaindiana.org/ Reference Autism Society of Indiana. (2018, December 15). Autism Facts and Statistics Did you know? https:// www.autismsocietyofindiana.org/ Family Caregiving Alliance: National Canter on Caregiving. (2019, April 17). Caregiver statistics: Demographics. Family Caregiver Alliance. https://www.caregiver.org/ caregiver-statistics-demographics Do you have a particularly memorable or encouraging experience to share from your time working with this organization? One of my favorite stories is how a senior impacted a new class of 6th and 7th graders. He started attending IA when he was in 8th grade. His senior year he was a cadet teacher in one of my classes. He led activities and created games and learning materials. The 6th and 7th graders loved him. They easily connected with him and his drawings of popular characters such as Disney/Pixar characters and SpongeBob. He drew pictures to go with the novels we read and picture for vocabulary words. He would make character references in these materials too to see if the students could figure out the references. These visuals helped the students’ understanding. This student graduated 4 years ago but his impact is lasting. One of those 6th graders, now a 10th grader, draws vocabulary pictures and has requested to be a cadet teacher for me when he is a senior. A 7th grade student looks forward to the 10th grade student’s new pictures each week. Other students enjoy trying to figure out his character references.
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.
January 2021 • Special Needs Living
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By a Special Needs Mom
a moment of inspiration – you are not alone! By Maureen Marsh
Just like everyone else, if you had told me ahead of time what was going to happen in the year 2020, I would never have believed you. The events that have unfolded will be scrutinized and discussed in history books, and yet here we are, living it in real-time. There isn’t a single person that hasn’t been affected in some way, and the overarching theme has been loss: loss of loved ones to a novel virus, loss of jobs, loss of relationships, loss of security, and loss of faith. I can’t help but think that the way the collective population is feeling right now is simply how the special needs community feels all the time. Even though we are perhaps the best equipped to deal with things like health scares, disappointing cancellations, and altering every facet of our daily existence on a moment’s notice, we are also the most vulnerable and have the most to lose. I have read the comments on social media from parents of typical kids all year long, and the initial isolation was understandably very difficult for them, but for many of us, this was nothing new. When my now 8-year-old son was a toddler, his sensory issues were so severe that we could scarcely go outside at all. The sound of cars, airplanes, and sirens sent him into overload and he was inconsolable for what seemed like forever. He was also nonverbal and immobile far longer than his peers, so the children around us grew bored with him or didn’t understand how to play with him and his frequent meltdowns were off-putting to the children and parents alike. We played inside alone a lot for many years. While listening to the kids next door play through the fence this summer,
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I was reminded of a post I shared in one of my many special needs Facebook groups a few years ago, a group based in the United Kingdom with members all over the world. I rarely contribute as I am more of a lurker these days, but I was having a more difficult time than usual and wrote the following: July 6, 2016 “My son is 4 but developmentally is about 18 months. This causes him difficulty in playing with other kids. It is the peak of summer and when I looked out the window yesterday and saw all of the other kids on my street gathered next door with their little bikes and tricycles, it filled me with such an enormous sadness it literally took my breath away. The good thing is that my son seems to have no awareness of any of these differences, but it still hurts me and I had myself a good old-fashioned pity party. Anyway, it felt so weird to feel so sad on a sunny summer day. Just needed to vent. Thanks.” The responses I received were overwhelming. Dozens of other parents commented and shared their own stories of isolation and grief. One described herself as the “lady in the window,” always watching from inside to the outside. Another remarked that she had heard this called the Chronic Sorrow, a condition shared by parents of children with disabilities. I cried as I read through the comments, at once relating and feeling empathy but also relief that I was far from alone. This year entire nations are being asked to wear masks, but we have been wearing masks long before the pandemic. We put on a happy mask for co-workers, family, neighbors and friends. We put on a calm mask to quell an agitated or overstimulated child. We put on a strong mask when we are talking to a medical team or educational professional and advocating for our loved ones. We put on an alive mask when we are dying inside.
My son got off the school bus on Friday, March 13, 2020, and as of this writing he has not returned in person to school. He does not have the capacity to understand exactly why and does not have the ability to express complex feelings about any of it. It may be years before we know the full impact this has had on him, let alone ourselves. Some in the special needs community were already hanging by a thread, and the thread has stretched even further in 2020. I am grateful for the online community now more than ever as it has been a lifeline in this storm. We have cultivated the skill set necessary to weather an epic event, and I feel we have a lot to teach others about how to survive. The biggest shift, however, is in how people outside our community are suddenly in tune with our struggles. When we say we have been isolated for months, that has a real and tangible meaning to families that had no previous experience like ours. When we talk of our crippling anxiety, or PTSD as it relates to hospitalizations and medical issues, we are now relatable in a universal way. For all of the terrible things that have happened in 2020, one positive thing may be that the gap between our worlds has closed a bit. I am cautiously optimistic that this will translate to a greater awareness in the future of the specific struggles of families with special needs. For now, I hope that anyone experiencing the Chronic Sorrow has the strength to reach out and to ask for help, even if it is just to a group online; to stay connected, even if it is virtual; and to do the small things that bring joy and peace. Above all, know that whatever you are feeling, you are not alone. Calling all individuals with special needs, parents, grandparents – If you would like to share some inspiration with the community or nominate someone else to be in an upcoming issue of Special Needs Living, email us at SpecialNeedsLivingIndy@n2pub.com.
4 Reasons Why Writing Composition May Be Hard for Your Child Nikki Gray, MA, BCBA, LBA
As a parent, teacher, or behavior analyst, you may have encountered situations where presenting a writing assignment to a child who has a developmental or intellectual disability has led to hours long problem behavior. These behaviors can range in severity from sitting in silence and refusing to complete work, to calling the work stupid, joking around and getting peers off task, to breaking pencils, ripping papers, hitting, throwing desks, to physical aggression. There are 4 areas that can be assessed to assist these learners to becoming more fluent and confident in their ability to complete writing assignments. 1. Fine Motor. If the student is using an improper grip with a pen or pencil or not typing appropriately with a keyboard, the physical act of writing or typing can cause pain. Correcting pencil grip and teaching keyboarding to fluency are ways that the lack of fine motor skills (as they relate to using a writing utensil and keyboard) can be eliminated as a barrier to completing written tasks. 2. Delays or deficits in naming items. Children who have strong and fluent naming skills, including categorizing and telling features and functions of items, are able to better answer WH questions after they read. For example, a learner who can name a cat when they see it as well as name the features, functions and class of a cat are better able to answer a WH question if told, “the cat scratched at the door.” The child is able to answer this because they have learned that a cat can live in a house, a house has doors, a cat has claws and that claws can scratch. When a learner is unable to label and categorize items, it impacts their ability to answer WH questions and to build on those skills to compose text.
everyday speaking ability. He writes that spelling words (above their conversational ability) becomes a rote response, and reading words becomes “word calling” with no comprehension taking place. The child will be able to read and spell the word, but because are not using the word in everyday conversational language, they will not be able to compose text related to the word. Many skills go into a student being able to produce a written response. We are often attempting to decrease problem behavior related to composing text/writing assignments without first analyzing and assessing what the text is asking the learner to do and if they have the skills to do it. Many people view ABA as a therapy that is only for children under the age of 7. ABA is beneficial for older individuals and one of the ways is teaching the skills identified in this articles so that children are successful and independent when given writing tasks in the educational setting. For more information, contact us at our Indy location by calling 317-388-8131 or our Evansville location at 812-636-1533 or visit us online at www.tiiba.org.
3. WH questions Discrimination. Answering WH questions involves the child knowing that who is referring to a person, where is referring to place, when is referring to time, and what is referring to a noun. If a child reads the sentence, “the cat scratched at the door,” answering a WH question may be difficult to answer without the ability to discriminate what the question is asking. The child may require additional supports for discriminating these questions. 4. Delays or deficits in conversational ability. Dr. Pat MCGreevy writes in his book, "Essentials for Living," that most learners will not be able to comprehend text at a level that is higher than their January 2021 • Special Needs Living
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INDIANA non-profit spotlight By Lisa Wells
DOWN SYNDROME
What is Down Syndrome?
Down syndrome is caused by having a third copy of the 21st chromosome instead of just two copies. It is considered an intellectual and developmental disability (I/DD) and affects people from all walks of life. Down syndrome occurs in one out of every 691 births. There are approximately 350,000 individuals with Down syndrome living within the United States. People with Down syndrome possess a wide degree of abilities and are active participants in civic, educational, occupational, social, and recreational activities in the community. How does Down Syndrome Indiana support those in the Down Syndrome community?
Down Syndrome Indiana is a one-stop-shop for information and resources on Down syndrome. The programs and services it offers are intended to promote the inclusion of individuals with Down syndrome in their greater community, as well as to offer support and information to families, caregivers, educators, employers, and the professionals who serve these individuals. Down Syndrome Indiana offers support at every age. Programs and services include: • Adult Activities • Awareness Presentations • Buddy Walk®
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• Community Support Groups • D.A.D.S. • Educator Resources • First Call • Information and Resource Referrals • The Lucky Mama Project • Mom’s Night Out • New Parent Packets • One-day Conference • Public Policy Advocacy • The Learning Program™ • And more … Down Syndrome Indiana is a not-for-profit, 501 (c) 3, non-member organization and is dedicated to enhancing the lives of individuals from infancy through adulthood. How can others get involved or support your organization?
There are so many ways that you can get involved in Down Syndrome Indiana … If you would like to sign up for our weekly e-newsletter, you can do so here: https://dsindiana.org/dsienews/. A program guide can be downloaded from https://dsindiana.org/ program-guide/.
If you would like to volunteer from home to make cards or prepare fundraising mailings, please sign up at this link https://dsindiana.org/get-involved/volunteer-from-home/. Thank you in advance for your help! If you would like to make a donation, please visit us at https://dsindiana.org/donate/make-a-donation/. If you have an interest in public policy and would like to be a Down Syndrome Indiana public policy advocate, please visit us at https://dsindiana.org/policy-and-advocacy/. What difficulties and or challenges do you help families and/ or individuals with Down Syndrome overcome?
When a parent learns that their baby is going to be born with Down syndrome or has been born with Down syndrome, they may feel fear about what their child’s future holds. No matter what a parent feels upon learning the diagnosis, every parent wants more information. If you type, “Down syndrome” into a search engine, you can obtain 1,700,000 results. With that many
items on the web, how does a new parent know where to begin finding accurate and up-to-date information? That is why Down Syndrome Indiana and the programs, services, and events that it offers, are so important. You see, we envision a future in which each person enjoys a happy, healthy, and productive daily life. We make this future possible through family guidance, comprehensive resources, community outreach, and public leadership. Our mission is to enhance the lives of individuals with Down syndrome and their families. We advise, educate, encourage, connect, include, and advocate. Anything else you would like to include?
We are so excited that Down Syndrome Indiana was able to launch its newest community support group, Black Family Village of Down Syndrome Indiana. In addition, we are excited to announce that a Down syndrome Awareness license plate will be available in 2021! Down Syndrome Indiana 708 E. Michigan Street Indianapolis, IN 46202 317-925-7617 info@dsindiana.org https://dsindiana.org/
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.
January 2021 • Special Needs Living
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34 Special Needs Living • January 2021
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