Special Needs Living April 2021 Digital Issue

living

Special Needs

April 2021

Indianapolis & Surrounding Areas

ON THE COVER

Meet the Dilts Family – Jeremy, Kimberly, Hunter and Eli Photos by: Heather Gregg – 21 Vines Photography

Inside: Indy Autism Project Matt Knight – Getting a Job What is Autism Meet the Dilts Family Autism Society of Indiana Sponsor Spotlight: ACE – Autism Center for Enrichment Sibling Perspective: The Strauss Sisters Meet the Brenneman Family Pioneer Parents: Michele Trivedi Sensory Play Date Local Events and More

CONNECTING - INSPIRING - EDUCATING - FAMILIES WITH SPECIAL NEEDS

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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.

April 2021 • Special Needs Living

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Sponsor I N D E X Neighborhood

Thank you to all the below businesses who have chosen to support Special Needs Living magazine each month!!

They would be delighted to help you with your next project or need. If you know of a business who helps those with Special Needs and would be a good resource to families please email us to let us know. Jamie.McCabe@n2pub.com

ABA & COMPREHENSIVE SERVICES K1ds Count Therapy (317) 520-4748

CAT CARE & SITTING Bastet Cat Care & Sitting (317) 919-1948

ABA SERVICES Autism Center for Enrichment (317) 436-7080

DENTAL CARE Children’s Dental Center (317) 842-8453

Mindful and Modern ABA Therapies (317) 827-7777

FINANCIAL Munder Financial James Munder (317) 238-6621

The Indiana Institute for Behavior Analysis, LLC (317) 388-8131 ABA/COMPREHENSIVE SERVICES The Hope Source (317) 578-0410 ACCESSIBILITY PRODUCTS AMRamp (260) 519-1935 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 CASE MANAGEMENT Connections Case Management (317) 440-0637 IPMG - Indiana Professional Management Group (866) 672-4764

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LANDSCAPING/LAWN CARE/ LANDSCAPE LIGHTING Franco Landscaping, Inc (317) 858-3858 MOBILITY / ACCESSIBILITY CYA Mobility (317) 530-2541 MORTGAGE CrossCountry Mortgage (317) 666-4679

WestPoint Financial Group Gordon Homes (317) 567-2005

NEUROFEEDBACK THERAPY Indy Neurofeedback (317) 888-8500

FUNCTIONAL MEDICINE Wholestic Nutrition (317) 429-0111

PEDIATRIC THERAPY Wee Speak (765) 446-8300

GYMNASTICS Body by GymRoots Studio (317) 579-9300

REAL ESTATE Encore Sotheby’s Patti & Jeff Carroll (317) 809-5839

HEALTH & WELLNESS LifeVantage - Team Richards Kristin Richards (317) 698-5264 Ritello Clifton Herbert (661) 317-6157 INSURANCE State Farm John Cole (317) 430-1958 INVESTMENT MANAGEMENT Dan Claxton Investment Advisory & Broker Dan Claxton (317) 250-8080

REALTOR F.C. Tucker Nicole Lyon (317) 501-0639 REGENERATIVE MEDICINE/STEM CELL THERAPY Destination ReGen (317) 522-1980 REMODELING/CONSTRUCTION Ray’s Construction LLC Ray Valverde (317) 515-5308

SCHOOL Dynamic Minds Academy (317) 578-0410

SCULPTURE, POTTERY & ART Ripple Mobile Arts (317) 514-8469

SUPPORT SERVICES Easterseals Crossroads (317) 466-1000

SCHOOL - SPECIAL NEEDS The Fortune Academy (317) 377-0544

SPECIAL EDUCATION CONSULTING IEP Services, LLC. Sheila Wolfe (317) 573-9610

THERAPY & TESTING SERVICES The Brain Center (317) 748-0034

Publisher's

Note Special needs individuals and parents are faced with many daily challenges. I am just amazed at the strength and willingness each of us has to overcome and push through many long and exhausting days at whatever stage we are in currently. I can honestly say I did not think this would be the life we would be living but I am so thankful and blessed for our journey and for all the joy having our son has brought me. It has not been very easy when Jordan is not able to communicate his wants and needs to us. A few years ago he would use his whole hand to touch photos and would not use his finger to point at a specific item, want, or need. This led to him being frustrated that he could not express his needs and wants and left us feeling hopeless. Through much therapy and much work on his end, he is able to use his finger to point and after a nine-month process, he has gotten his own LAMP unit that will help him in communicating his wants and needs with us. We still have a big hill to climb and much for him to learn in regards to how to communicate using LAMP. It is like learning a whole new language. We are excited and eager to give this a go and work to help him in engaging in communication. Jordan getting this unit is a milestone for us that we never thought would happen. We would love to share any milestones that your child has accomplished. Maybe it is getting dressed on their own, eating on their own, using the restroom, communicating, getting a driver’s license, graduating high school/college, getting their first job, or living on their own. Email photos and a caption to SpecialNeedsLivingIndy@n2pub.com.

Some of the things above, we don’t even know if they will happen for our son. We pray and hope one day they do. We work hard to help him achieve

these things. But we know that if he does not, that it is ok and we love him for him and for the wonderful person he is. I did not always have peace with this. It took a lot of personal healing and growth to get to a place of finding peace with our son’s future. I thank Purposeful Living Inc. for their help in helping me heal to get to this point.

Each of the stories we have the pleasure of sharing has had an impact on me. I am so encouraged to keep pushing and fighting even when I do not feel like it because I know so many in the special needs community are out there doing it, too. 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. 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.

After working on developing better finger isolation, and almost nine months later, Jordan officially has his own LAMP unit to help him communicate his needs with us. This is a milestone for us. Two years ago we did not think we would make it to this moment.

Father’s Day is just a few months away.

For the June issue, we would love to include a few shout-outs of love and thanks to all the fathers out there.

Send us a photo with a caption that includes who is in the photo and the message you would like to share to give a shout-out to the fathers, dads, grandpas out there. Email this to SpecialNeedsLivingIndy@n2pub.com

by April 20 to make it in the June issue.

To keep up with events, stories, and things we are looking to add to the magazine, you can follow us on our Facebook page: Special Needs Living magazine – You can view our monthly digital versions there also.

We hope you enjoy the April issue of Special Needs Living. We welcome feedback, thoughts, or ideas. It is such a blessing to bring this magazine and resource to you each and every month!

Your Publisher, Jamie McCabe 248-882-8448 Jamie.McCabe@n2pub.com

April 2021 • Special Needs Living

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MEET THE Special Needs Living

TEAM

JAMIE MCCABE Publisher & Area Director

HEATHER GREGG Photographer 21 Vines Photography

BRITTANY LOWE Event Executive

MARIA SMIETANA Editor & Writer

LEAH PARKS Knightingale + Willow Photography

WRITER & CONTRIBUTORS

CARLA MILLER

DEANDRA YATES

ERIN BOAZ

MATT KNIGHT

AARON OLSON

PAUL HATHCOAT

ANGELA ARLINGTON

SHANNAN PENAFLOR

REBECCA WOOD

LISA MONGE

SHEILA WOLFE

6 Special Needs Living • April 2021

LAURA SPIEGEL

MAUREEN MARSH

ZACH ELLIOTT

promotions

THIS MAGAZINE IS

FOR YOU - BY YOU

TO S U P P O R T & CO N N E C T YO U HERE IS HOW YOU CAN BE INVOLVED FATHER’S DAY SHOUT OUTS

Father’s Day is just a few months away. For the June issue, we would love to include a few shout-outs of love and thanks to all the fathers out there. Send us a photo with a caption that includes who is in the photo and the message you would like to share to give a shout-out to the fathers, dads, grandpas out there. Email this to SpecialNeedsLivingIndy@n2pub.com by April 20 to make it in the June issue.

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.

HAVE A STORY TO SHARE?

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

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

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.

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.

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).

REFERRAL PROGRAM

We have a referral program of 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.

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 HAVE A STORY TO SHARE? OPEN YOUR CAMERA AND HOLD IT OVER THIS CODE, CLICK THE LINK THAT APPEARS AND YOU WILL BE TAKEN TO THE PAGE TO VIEW SOME OF THE STORY OPTIONS.

April 2021 • Special Needs Living

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By DeAndra Dycus

www.indyautismproject.com Ali Brown is a newly elected City Councillor for the city of Indianapolis District 5. She is also a wife and a loving mother of a 4-year-old son named Dylan.

Ali is what I like to call a Warrior Mom. Her courage is to be admired.

Her son Dylan was diagnosed with autism spectrum disorder at the young age of 2 1/2. Ali shared candidly with me how through early intervention her beloved Dylan was diagnosed quickly and treatment took place. She was extremely grateful for the swift thinking of her son’s therapist and medical practitioner.

Through her son’s treatment and meeting other parents who had children on the spectrum, Ali quickly realized there were some major concerns in Indianapolis as it pertained to being equipped and educated to make the city inclusive to the needs of those on the spectrum. Ali also quickly noticed racial disparities of children on the spectrum. One key disparity is the time of diagnosis.

8 Special Needs Living • April 2021

Zach, Ali, Dylan Brown

Ali had an enthusiasm to run for the District 5 seat for the Indianapolis City Council, and with that enthusiasm came determination. “I ran for City-County Council to represent young families and what matters to them. I wanted to be a voice that is often unheard in government. I ran because I believe we need an equitable government that does the most for our most vulnerable.”

Ali was determined to highlight the disparities and lack of support in Indianapolis for families with children who are on the spectrum as well adults on the spectrum who desired to live a normal life. Ali spoke strongly in our interview about the growing concerns of safety, from the workplace to taking public transportation.

On December 7, 2020, the Indy Autism Project was established with the help of All Brown and the support of her council colleagues. The project has 5 pillars – Public Safety, Parks and Recreation, Workforce Development, Mass Transit, Travel and Tourism. The overall goal of the project is to increase community awareness in Indy’s neurodiverse community, creating a better understanding of what ASD is and how it affects each individual differently and helping underserved communities gain access to diagnosis and treatment.

Councillor Brown is to be admired. She is a dedicated mom and wife but also a stellar leader in our community. Once elected, Ali set out to of make Indiana only the second state to be certified in diversity and inclusion as it pertains to meeting the needs of individuals on the spectrum.

Our interview ended with me shedding tears. It was eye-opening and comforting to connect with a mom who identifies with the same journey that my son and I are on.

Funding for the project will come from several sources but will not increase taxes. Funding partners include the City of Indianapolis, Marion County City-County Council, IMPD, the Sheriff’s Department, Easterseals Crossroads, Indy Chamber, Autism Society of Indiana, and many more.

“I created the Indy Autism Project with the goal of creating a city that leads with kindness and sees the strength in our differences. People on the spectrum deserve a world that works for them and allows them to achieve their goals,” Ali said.

For more information, visit www.indyautismproject.com or email Councillor Ali Brown at thealibrown@gmail.com.

Are you working on a project to help support the special needs community? We would love to let the community know more in an upcoming issue of Special Needs Living? Email us at SpecialNeedsLivingIndy@n2pub.com.

BASTET CAT CARE & SITTING Accommodating all feline family members including special medical & behavioral needs.

Owner AJ Gegenheimer, RVT Bonded & Insured with Pet Sitters Association

(317) 919-1948 | bccs95@gmail.com Teaching & Giving Injections, Medicate, Nail Trims & Minor Grooming, Vet Transports, Cat Sitting Serving the westside of Indianapolis, Avon, Brownsburg, Plainfield, Zionsville

April 2021 • Special Needs Living

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TELEMEDICINE PRACTICE Join our Addressing Autism From Functional Medicine Perspective Program and understand the mind and body and spirit connection!

Gain the knowledge and expertise to help yourself and others overcome their optimum health!

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 abnormalities 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.

Dr. Anass Sentisi, HCHC, CFMP Founder and Medical Director

LORI VARAS, CFMC Executive Coaching Director

Wondering If Wholestic Nutrition Is Right For You? Schedule a FREE Discovery Consultationwith a highly trained TELEHEALTH coach!

317-429-0111 | WholesticNutrition.com | 621 Fort Wayne Ave, Indianapolis, IN 46204

10 Special Needs Living • April 2021

pastor’s corner

If we all can agree that God highlighted Jesus’ interactions with individuals living with disabilities in the Bible, then we can just as easily agree that this population is not only intentionally and wonderfully made, but also that they serve a specific purpose in helping us understand who God himself is. After all, the Bible was given to mankind so we can learn who God is and how He has

By Paul Hathcoat interacted with us in history. In that history, there is an unusually high number of interactions that His son, Jesus Christ, had with people with disabilities. Let us review those and try to uncover who Jesus is through his reactions to the disability population.

In the book of John, we read about Jesus encountering a man who was likely paralyzed and “had been sick for 38 years” (John 5:5-8 NLT). Jesus heals him with only a few words. It happened to be on a Sunday and the religious men of that time became enraged that Jesus would perform miracles on the Sabbath. This act seems to have been done out of genuine love for another human, but also illustrates to unbelievers that caring for those in need around us is far more important than trying to adhere to a set of religious rules and social standards. God is revealing that to love our neighbor is synonymous with loving our God. Nothing is more important. Especially social decorum in the place of genuine supports.

In general, when coming across someone with a physical disability, Jesus responded in one way. He made it a point to cross cultural norms and social boundaries and genuinely connect with the disabled person (See John 9:1-12). In Jesus’ time, many people with physical disabilities were considered “unclean” and, therefore, were ignored and pushed into the shadows.

By directly connecting with them, healing them, and making sure others were there to see, Jesus taught us a lot about what He and His Father value. They value each person as a full and whole member of the community. And the community itself, well they learned as we are still learning. When we fully look past someone’s disability and only see their potential and value as a part of our community, then both of us are healed. God sees right to our hearts and ignores the other parts of our being. We could all use a brush-up with that lesson of life.

As it pertains to people with intellectual and cognitive disabilities, Jesus also had a message and standard when meeting them. Although he did have the ability to cast out demons, he also instructed those charged with the care and protection of them to pray and fast. Now, why would Jesus ask these caregivers to pray and fast in order to heal and help? Have you ever tried to pray and fast? Just maybe building the disciplines of prayer and fasting would enable you and I to see the disabilities in a new way and in turn, respond with love and care. There is no magic lens to see through, but taking the time to see past someone’s disability and into them as a person can fulfill what Jesus was asking His people to do. That effort doesn’t come easy at times for people and caregivers, but time and discipline can help all of us see things clearly. The power is in the transforming of one’s mind and seeing things as Jesus does.

Lastly, I feel compelled to discuss my own opinion and experience in the matter of Christ and His view of people living with disabilities. He sought them out. He didn’t

just use them or make an example of them. He intentionally drew attention to people with disabilities because they represent a stripped-down, maskless, completely, and totally authentic version of God’s people, and connected with them as equals. They needed Him like we all need Him, but they approached without the same level of contradiction and sin in their hearts. I don’t profess to know what it is like to live my life disabled.

What I do know, though, is what I see in the good people and families I get to lock arms with in life, that do know. They most often are not concerned with anything other than the moment. They relish each interaction and are grateful for smiles and giggles. They are quick with the thank you and humble in receiving the same. They have been taught a version of life that Jesus would like us all to learn – slow down, be patient, be thankful, and know that God is waiting on you one day. Jesus knew what He was doing when He illuminated these people and God made sure that we got to read about their stories in His history book. Thank you, Lord, for your love for all people!

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 phone number or email 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.

April 2021 • Special Needs Living

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non-profit spotlight

By Shannan Penaflor & Rachel Deaton

Our History The Autism Society of Indiana (ASI) roots are founded in parents with the desire to help their children affected by autism.

Our Mission ASI exists to ensure that every individual and every family affected by autism in the state of Indiana receives the high-quality services they deserve.

Our Vision To make our services more readily available throughout the state of Indiana.

Our Values ASI is dedicated to ensuring that every program, service, or support provided to our community is Person-Centered, and focused on Personal Outcome Measures (POM). Specifically, all of our work is based on the following core values: • Each person with autism is unique and should be treated as such.

• Every person with autism should have the same opportunities as any other person.

• People with autism should have choices and control over their lives.

Our 2021 Programs In a world where social distancing has become the norm and wearing a mask in public is commonplace, many individuals with autism and their families have experienced unique and compounding challenges. The Autism Society of Indiana wants you to know, you are not alone, we are here to help, and we hope this year brings more opportunities for connection in all of our lives.

Here is a snapshot of a few of our programs that you may be interested in: Building Bridges The CDC says that “Black and Hispanic children continue to be less likely to be

12 Special Needs Living • April 2021

identified with ASD than white children.” Many Black and Hispanic children with autism in Indiana lack the proper diagnosis and or services they need. ASI believes we can do better; we must do better! Building Bridges is a program that focuses on building bridges of trust to serve targeted urban settings throughout Indiana. ASI wants to help 100 underserved families find the diagnosis, resources, and support they need to thrive.

Career Services ASI has provided career services for people with autism through vocational rehabilitation since 2016. ASI understands that each individual with autism is unique, varies in age, educational background, and personality type. Participants can expect one-on-one individualized attention as well as the uncovering of passions, talents, and qualifications to discover what career would be best to pursue. Participants find a variety of jobs, from first jobs in the service industry to full-time work in a permanent position. Once a job is obtained, we also help participants navigate the workplace to increase the likelihood of successful job placement.

Launch into Life Too often students with autism spend the first several years out of high school without direction or focus. Families often don’t have time or energy to think beyond the high school years.

What does life after high school look like for an individual with autism? Launch into Life is a series of eight classes, designed to practically equip individuals ages 16–23 with autism, as they navigate the transition into adult life. This program provides a comprehensive plan utilizing the Life Course model to address goals in the areas of Daily Life, Employment, Community Living, Safety and Security, Healthy Living, Socialization, Spirituality, Citizenship, and Advocacy.

Training for Families & Community Moving beyond autism awareness and promoting autism acceptance is a priority at ASI. We provide training for individuals with autism, their families, first responders, law enforcement, and professional and community organizations to foster greater

Proud Autism Mom, Shannan Penaflor, Director of Resources and Support at ASI

Rachel Deaton, Director of Training & Public Policy at ASI

acceptance and inclusion. Some of our training includes: • Autism 101: A presentation designed to provide basic information on autism. This presentation will talk about challenges faced by individuals with autism and their families, as well as provide helpful tips and strategies.

• Family Support Waiver Workshop: A presentation designed to help families obtain the Family Support Waiver for their loved one with autism. In this presentation, we will answer: What is the Family Support Waiver? Why does my child need the waiver? How can a waiver help?

• Autism and the Internet: A presentation to help protect and keep individuals with autism safe while using the internet • Navigating the Spectrum: If you have just received an autism diagnosis, this presentation will help you navigate the next steps.

Direct Care ASI offers direct care, participant assistance and care (PAC) and respite, through the Medicaid Waiver in all 92 counties of Indiana.

PAC promotes independence by providing training aimed at the individual with autism living successfully in their own community.

Respite provides care for the caregiver allowing them to recharge and reconnect to themselves or others. If you or your loved one with autism does not have the Medicaid Waiver, please contact us to discuss eligibility and the application process.

To learn more about these programs and all our services please visit our website at autismsocietyofindiana.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.

Scan to download our app and learn more!

The Brain Center Comprehensive outpatient neuropsychological and psychological assessment services for children, adolescent, adult, and geriatric patients in whom impairments of cognitive or neuropsychiatric functioning are evident or suspected.

Psychotherapy for children, adolescents and adults.

Neuropsychological Testing Forensic/Legal Evaluations Psychotherapy & Caregiver Consults CogMed Training Animal-Assisted Therapy

317-748-0034 braincenteratgeist.com April 2021 • Special Needs Living

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prader-willi syndrome (pws)

meet the

By Rebecca Wood

BRENNEMAN FAMILY B L A K E – N ATA L I E – E VA N – B E N – D R E W

Last summer, Natalie and Blake Brenneman witnessed a marvelous moment. Their 5-year-old son Evan climbed onto a bike and pedaled around a high school parking lot. Tears filled Natalie’s eyes as she witnessed her son’s first bike ride.

A child’s first bike ride is an iconic occasion for any parent, but for the Brennemans the ride held additional significance. Gross motor skills have always proved challenging for Evan; riding a bike was no exception. Undeterred, Evan devoted countless hours to mastering the skill. Under the coaching of his parents and grandfather, Evan worked on pedaling, braking, and balance.

When Evan finally cycled down the street, the scene was even sweeter observing the fruits of Evan’s persistence.

“It was such a rewarding moment to see him moving forward on a bike,” says Natalie. “To see him set goals and work towards them is truly beautiful.”

In many ways, Evan resembles his peers. Natalie describes her son as a “cool kid” who loves all sorts of vehicles. He is partial to Lamborghinis, vowing to save up to buy this sports car for his 16th birthday.

Evan lights up on playgrounds. He breaks into a big smile while swaying on a swing or climbing on play equipment.

However, Evan faces many more challenges than his other classmates and friends.

Evan has Prader-Willi syndrome (PWS). This rare genetic disorder encompasses a wide array of medical and development issues. One of the biggest struggles for those with PWS is appetite and hunger cues. PWS patients wrestle with constant, insatiable hunger and the lack of a “feeling full” sensation. Evan refers to this as his “special belly” and explains, “I think sometimes I’m hungry when I just ate.” Natalie adds that PWS makes food security a critical concern.

Evan faces other difficulties. Changes in schedule can induce anxiety. The Brennemans mindfully talk Evan through any differences in the day.

Photo credit: Liz Kaye Photography

Volunteers are the Heart of our Organization!

April is Volunteer Appreciation Month and at ICAN, nearly 200 Volunteers Support our Breeding, Puppy Raising, Furloughing, and Event Programs.

Interested in joining our mission?

Contact Julie at juliem@icandog.org.

5100 Charles Court | Suite 100 Zionsville, IN 46077

www.icandog.org Photo by Liz Kaye.

14 Special Needs Living • April 2021

One of Evan’s biggest current struggles is scoliosis. Evan wears a back brace 16 hours a day to rectify spinal issues. Evan selected a purple brace thinking it would function as a cool accessory.

Unfortunately, the fun color didn’t mask the discomfort. Initially, Evan wept over the pain. Now, he’s become accustomed to the brace and understands its purpose. However, challenges with the brace still persist.

The Brennemans received Evan’s diagnosis shortly after his traumatic birth. Immediately after his delivery, Evan was shuttled to the NICU at IU West Hospital and then transported on to Riley Hospital. At Riley, Evan underwent a series of medical and genetic tests. Doctors finally identified PWS as causing Evan’s ailments.

“He was our first baby, and we fully anticipated a healthy boy,” Natalie says. “It was a really tough time. I had never heard of PWS. Googling it can be scary, too.”

Medical treatments and therapies began right away.

“Learning to navigate complex medical care, therapies, medications — it was really overwhelming in the beginning,” says

Natalie. “Delayed and missed milestones broke my heart, but like managing medical care, that has gotten easier.”

An array of dieticians and physicians — more than a dozen — treat Evan. He sees most of his doctors at Riley Hospital. Natalie refers to endocrinology as our “main squeeze.” Dr. Miller, an endocrinologist and PWS specialist at the University of Florida, oversees Evan’s care. As an added bonus with her treatment, the family pairs a trip to the beach with a visit to Dr. Miller.

Evan participates in numerous therapies. He engages in music therapy and hippotherapy at Pat’s Pals Therapy Ranch. Evan swims through the Optimist Miracle Movers.

“All of these are therapies, but they definitely feel like a lot of fun,” says Natalie.

Currently, Evan is a pre-K student at Little Quakers Academy in Plainfield. Twice a week, he attends half-day classes. Evan partakes in speech, physical, and occupational therapies at school.

The Brennemans refer to his school therapists and teachers as the “dream team.”

family savors neighborhood walks, weekend protein pancake breakfasts, and cooking at home.

For the Brennemans, PWS doesn’t diminish the joy found within their home. Natalie says, “I would never have chosen this path, but I’m so grateful to be on it.”

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.

Natalie does express some concerns about Evan’s transition to kindergarten in the fall. “I worry whether he will have the stamina for full-day kindergarten,” she says. She expressed other apprehensions about the presence of aides, therapies, and food security.

With these questions and countless others, Natalie looks to the PWS community. Since Evan’s diagnosis, the Brennemans have connected with the PWS online community and made local friendships, too. The family has found support and wisdom from others within this group.

“Connecting with others in the PWS community brought us so much relief,” says Natalie. “It was the best thing and critical for us.”

The Brennemans strive to pass this same encouragement on to others within the PWS family, specifically those who are new to the diagnosis. The family also promotes PWS research by participating in fundraising activities and awareness.

Life is full for the Brenneman family. Evan is a big brother to 1-year-old Drew and 3-year-old Ben. Natalie is expecting a fourth child in July. The busy family resides in Plainfield and enjoys visiting local spots like Hummel Park, Brightly Art Studio, and cauliflower crust pizza from Chicago’s Pizza. The April 2021 • Special Needs Living

15

By Julie Gordon, LCSW

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Part 3: Hope, Awareness & ASD Merriam-Webster defines awareness as “knowledge and understanding that something is happening or exists.”

Self-awareness is defined as “awareness of one’s own personality or individuality.” When it comes to self-awareness, we are developing the knowledge about ourselves in relation to others, the environment around us and in comparison to our own preferences and performance.

In ASD, why does the emergence of self-awareness during intervention feel like regression?

with others and their environments, feelings of incompetence will increase as they realize that they cannot do or understand something.

“I can see that her face changed expression, but I don’t know what it means.”

“My friend just walked away from me when I was talking to him, but I don’t know why he left.”

“I cannot keep up with what the teacher is saying, but I don’t know what to do about it.”

In child development, self-awareness does not appear until closer to two years old. Before that time, we see ourselves as one with our parent since perspective taking is just emerging. We do not yet realize how others see us or that they might have different opinions and points of view. As young children begin to learn how to put themselves “in other people’s shoes”, they will explore their parents perspective through pretend play and quite literally, put their tiny feet in their parents shoes!

This incongruence in awareness emergence and coping skill development can cause the same “terrible two”- like, fight or flight responses of aggression, anxiety or shutdown. While it feels like regression to toddlerhood, it is significant, genuine progress in developmental milestones. Nevertheless, this period can be incredibly stressful and even frightening for the individual.

For a short period of time, there is a lag in awareness and coping skill. They start to realized they are a separate person from their parent, start to explore and try new things on their own, but do not yet have the skills to emotionally regulate independently when there is a problem to solve. This brief gap can lead to frustration as we see in the infamous “terrible twos and threes”.

In addition, these individuals will begin to notice how they are different from others who might be ahead of them in development. Depressive symptoms can occur during this time and questions of “why do I think/act/behave differently?” may be asked. If they do not have the attuned communication skills yet, it might be something they are feeling but cannot express verbally.

Due to the impact of ASD on neurodevelopment, specifically in the prefrontal cortex, prerequisite developmental skills like co-regulation, joint attention, social cognition and flexible thinking are not being mastered adequately. These skills, among others, are necessary for the development of early self-awareness, self-regulation and later executive functioning skills.

There is hope. A qualified clinician can guide and encourage the individual with ASD and their caregivers through this very sensitive and critical time in therapy. The clinician must be competent in child development, supportive of mental health and understand that maladaptive, fight or flight behavior is simply communication of an individual’s struggle in a dynamic world without the dynamic skills to successfully navigate it.

With ABA therapy goals targeted for mastery in the above skills, an individual’s awareness will increase naturally following this same developmental path, regardless of whether they are beginning therapy at 4 or 14 years old. As the individual starts to make gains in their ability to engage

16 Special Needs Living • April 2021

Julie Gordon has been in the field of ASD for 19 years. She is the owner of The Hope Source and founder of Dynamic Minds Academy.

April 2021 • Special Needs Living

17

about pioneer parents in indiana

By Angela Arlington

Michele Trivedi M ichele Trivedi remembers the frustration of health insurers refusing to cover autism. “When my child was diagnosed, since she had a major regression of speech and behavioral skills, the doctors wanted to test her for a brain tumor. None of that testing was covered by our insurance due to her diagnosis of autism – even though the tests were for brain tumors. The first year of her autism diagnosis, we paid $75,000 out of pocket for testing and treatment, even though she did have “good” health insurance – all because insurers refused to cover autism and declared it a “pre-existing condition.” Her medical bills were twice our income at the time – I had to give up my career when we moved to Indiana, and my spouse was in medical residency, making about $35,000 per year. Thankfully, my in-laws paid the medical bills so that we could access treatment. We were lucky.”

Before the Indiana Autism Insurance Reform Law was passed in 2000, many insurance carriers in Indiana would drop children from their plan once they were diagnosed with autism – rendering them “uninsurable due to a pre-existing condition.” This meant that the child had to go on the state’s high-risk plan with a long waitlist or go uninsured. Some insurers would allow the child to stay on their plan, but the insurer would not cover anything remotely related to autism, such as medications, seizure treatment, MRI or CT scans of the brain.

“I contacted my HMO on the first day that the autism coverage law went into effect to find out how to get services covered. After spending a few hours on the phone being passed from one supervisor to another, I was told, “Yes, we heard about that law, but

18 Special Needs Living • April 2021

we think it is going to get repealed next legislative session, so we are not making any changes.”

Many parents had fought for so long, and Michele was not going to be defeated, “So, I filed complaints with the Indiana Department of Insurance and filed appeals with my HMO. I wrote letters to each legislator who voted for the law, especially the authors and co-sponsors. I gathered stories from parents whose treatment plans and attempts to get pre-authorization for services were ignored. The staff at The Arc of Indiana, Autism Society of Indiana, and members of The Autism Coalition of Indiana sent families to me for help to navigate appeals and file complaints. I spent many hours and put many miles on my car going to Indy to the Department of Insurance to meet with regulators and many hours at the Statehouse testifying against “mandate lite” bills that would allow insurance plans to pick which state mandates they could “opt-out of.” The autism coverage law was a main target of these bills – it was a way to repeal the “autism mandate” without the autism community being aware of it. For three legislative sessions in a row, these mandate lite bills were introduced and defeated.”

Michele remembers the beginning of her new vocation. “After my HMO was audited by the Department of Insurance and ordered to cover autism treatment, ABA, and all back claims to the date the law went into effect, I was asked by the Commissioner of the Department of Insurance to join a committee to draft the regulator’s bulletin to outline enforcement parameters for the autism mandate law requirements. I was the only consumer advocate on the committee, the rest of the members were from the insurance carriers or insurance industry lobbyists.” Bulletin 136 still guides autism insurance coverage in Indiana to this day.

In 2005, three moms in South Carolina rallied their community to introduce a bill after learning about the Indiana law and contacted Michele for assistance.

In 2008, they passed the second autism mandate. One of the moms later joined Autism Speaks to head their efforts to assist states in passing meaningful autism health insurance reform laws.

Michele continues to help families and autism treatment providers across the country to gain equal access to health insurance coverage for people with autism and other developmental disabilities. She is currently serving on a national committee to establish accreditation standards for ABA providers representing the family perspective.

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.

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19

meet the

Dilts

By Hope Johnson Photos by Heather Gregg – 21 Vines Photography Pictured: Jeremy, Kimberly, Hunter, and Eli Dilts

family

Jeremy, Angela, Hunter & Eli They say that it takes tenacity and a lot of love to raise a family and that proves true for one who lives in Bloomington, IN.

The Dilts family exemplifies the tenets of not only tenacity but perseverance and the will to thrive despite any circumstance.

They have overcome much, and have emerged stronger, able to confront the challenges life has placed before them.

Jeremy Dilts and his ex-wife, Angela Dilts (not pictured), are parents of a blended family of three children, two of whom have special needs. Hunter Dilts, 19, is on the autism spectrum, and Eli Dilts, 17, was diagnosed with an advanced brain cancer (medulloblastoma) in 2007 at age 7 with residual side effects.

Hunter is on his own for the first time, working at Kroger, living in a condo, taking a gap year before beginning post-high school classes at Ivy Tech. Living independently is a big step for Hunter.

Eli splits time between his parents and is taking part in the PRE-ETS service at Stone Belt, a program that helps prepare students for work and the outside world after high school, according to their website. He has a one-on-one aide at school and undergoes treatment with an oncologist, endocrinologist, psychiatrist, and LCSW.

Their oldest child, daughter Kennedy Schwartz, 23, lives across town with her family.

The Dilts family meets its challenges head-on, one at a time.

“Each challenge is unique and requires a unique solution.

Sometimes that solution is just perseverance. Other times, it requires a more proactive approach, but it all depends on the specific challenge,” Jeremy writes.

Jeremy is a civil defense attorney in the Indianapolis area who makes time for pro-bono work with the disability community.

“My family life provides the perspective that informs my pro bono work. I am very fortunate to be in a position where I can help other families,” he says.

20 Special Needs Living • April 2021

Living with a family whose members have multiple disabilities has taught Jeremy valuable life lessons. “The amount of adjustment it takes is incredible. Every aspect of life is impacted even with the great fortune we have had with respect to the relative mildness of my boys’ challenges,” Jeremy writes. “It still touches every aspect of my life. I wish everyone could have their eyes opened to how much is generally taken for granted.”

Since returning to Bloomington in 2001, Jeremy Dilts has been an instrumental force within the disability community.

From 2004 to 2010, Jeremy was an executive board member for Autism Society of Indiana (ASI), serving as treasurer from 2004-2006 and vice-president from 2007-2010. At the same time, he also became a member of the board of directors for the Indiana Autism Coalition, remaining in that capacity until the IAC merged with ASI in 2008.

Jeremy joined the board of the Monroe County Autism Foundation, (MCAF), in 2015. He became the president of the board in 2017 and is also the primary fundraiser and contact point for three other charitable endowments (two administered by the Dearborn Community Foundation and one by the Ohio County Community Foundation.).

It continues to be a learning curve for Jeremy while he goes through the parenting stages of life. “It is a massive change in perspective to raise special needs kids. When other parents were taking their kids to soccer practice, I was taking mine to therapy.

There is a sense of loss,” says Jeremy.

Despite that loss, there is much joy as well. “Hunter recently moved into his own apartment. At 19 years old, that is an expected measure for many kids his age. However, watching him flourish while living independently has been an absolute thrill,” Jeremy writes. “After several years of struggling with mobility, Eli finally walked a 5k without a walker. It was awesome.”

The family enjoys recreational pursuits as well. “My son, Hunter, is a runner. I enjoy running with him. More specifically (and because he is much faster than I am), I enjoy watching him run,” Jeremy says.

He adds, “Eli is not a runner, but really enjoys nerd culture. We watch a lot of superhero movies and shows, but when there is not a pandemic, we really enjoy attending concerts.”

He continues, “(t)here are a lot of platitudes about taking joy in the little things in life. When you are raising special needs kids, you do not need those platitudes.”

Jeremy is optimistic about his children’s future. He hopes for the same thing that every parent does — happiness and independence. Although Jeremy has some anxiety about their independence, that remains his ultimate goal.

“I want them to be productive members of society who can provide for themselves, manage their affairs independently,” Jeremy says, “and have the freedom to seek happiness and contentment wherever it is.”

He continues, “I am feeling good about Hunter’s start. I hope to see them both reach full independence in adulthood.”

The Dilts family certainly is proof that with a lot of love and understanding, anything is possible.

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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22 Special Needs Living • April 2021

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THANK YOU to the below Impact Supporters for helping to support Special Needs Living Magazine

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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.

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23

Hello! My name is Hayden and I’m 11 years old. I go to Brooks School Elementary and I’m in 4th grade. My brother, Ben, has Down syndrome. He is 21 years old. This is his second year of the vocational program at Hamilton Southeastern (HSE) High School.

What advice would you share for other siblings who have special a special needs brother or sister?

My advice for others would be to be patient and helpful. My mom always said I speak two languages...English and “Ben”. His speech has gotten better over the years, but sometimes I have to tell my mom what he means because I just get him.

What is your favorite memory with Ben? One of our favorite memories is camping in our backyard with our family. Ben and I love getting the tent organized for the night.

We make s’mores and sit by the fire and eat them! Yummy!! We also make amazing memories at our cabin in Canada in the summer time. We like to play silly games in the cabin.

Is there a funny story you would like share about you and Ben? My parents always laugh when they tell me about Ben cheating when he was teaching me to play Candyland. He would stack the deck so the special cards would be his.

What do you admire about Ben and how has that inspired you to become a better person?

Ben is VERY, VERY, VERY organized. He motivates me to be organized too. Ben has to work hard to learn easier things and it motivates me to work hard too.

siblings perspective

By Erin Baoz

Meet

&

Hayden Ben

24 Special Needs Living • April 2021

Are there any challenges you have had to overcome having a special needs brother?

Sometimes Ben will go out with his friends and he doesn’t want me to come if I wanted to come with him. Sometimes Ben will continue do things for me now that I’m older when I can do it myself.

How do you enjoy spending time with Ben? Ben and I LOVEEEEEEE to watch Sound Of Music with our mom. We watch it during Christmas time. It’s a tradition we do EVERY SINGLE YEAR. I also enjoy playing Mario Kart with Ben. Sometimes Ben might always beat me, but I don’t really care if he wins. We also play UNO. Sometimes I win or I lose, but we ALWAYS have fun with each other. We also play this silly game that we made up, but we really don’t even know what it’s called. It’s where we give someone some random ears like a unicorn horn, bunny ears, or moose ears. It’s pretty silly. As long as we have so much fun and laugh together a lot, that is ALL that matters with each other. And yes, we do LOVE spending time with each other.

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.

April 2021 • Special Needs Living

25

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Framing • Flooring • Roofing Needs Living • April 2021 • Yard Cleaning • Decks • Interior and Exterior Painting 26 Special

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local events Important Note: Prior to attend-

ing 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 should not wear a face coring due to risk of suffocation; and any person with a medical condition, mental health condition, or disability which prevents wearing 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. Please confirm event status and belowlisted details before going from the contact info provided below in case-specific event details 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

Events provided by : Brittany Lowe Event Executive

NCAA Division I Men’s Basketball Final Four April 3 and 5 Lucas Oil Stadium 500 S. Capitol Ave. Indianapolis, IN 46225 317-262-8600 https://www.lucasoilstadium.com/

My Child is Transitioning to Adulthood: What Now? April 22 6:00 pm–8:00 pm Location: Zoom 800-964-4746 https://www.aboutspecialkids.org/training/trainingcalendar/my-child-is-transitioning-to-adulthoodwhat-now/

Indy Fuel Games April 2, 7, 9, 15, 17, 23–25, 30 7:05 pm Indiana Farmers Coliseum 1202 E. 38th St. Indianapolis, IN 46205 Contact: 317-927-7622 https://www.indianastatefair.com/p/ indiana-farmers-coliseum

Respite Night April 3 Noblesville First United Methodist Church 2051 Monument St. Noblesville, IN 46060 765-748-7215 https://www.noblesvillefirst.com/?s=respite

S.H.E. Event (She Has Everything) April 10 11:00 am Indiana State Fairgrounds and Event Center 1202 E. 38th St. Indianapolis, IN 46205 317-927-7500 https://www.indianastatefair.com/ O’Reilly Auto Parts 500 World of Wheels presented by Ray Skillman April 16 to April 18 Indiana State Fairgrounds and Event Center 1202 E. 38th St. Indianapolis, IN 46205 317-927-7500 https://autorama.com/attend/indianapolis/ Powerful Women – Contemporary Art from the Eiteljorg Collection April 18–30 Eiteljorg Museum 500 W. Washington St. Indianapolis, IN 46204 317-636-9378 https://eiteljorg.org/exhibitions/powerfulwomen-contemporary-art-from-theeiteljorg-collection/

Building Partnerships with Schools: How to Be an Active Member of Your Child’s Team April 12 6:30 pm–7:15 pm Webinar https://iu.zoom.us/webinar/register/WN_ JAZmhsauTnSzPkrysEhz0Q Tech Expo April 15 8:00 am–3:00 pm Virtual https://www.patinsproject.org/services/conferences/ tech-expo?register Autism Parenting Summit April 20 and 21 Virtual https://autismparentingsummit.com/ Autism Parenting Summit April 25 1:00 pm–4:00 pm Glenbrook Square-Carson’s Lot 4201 Coldwater Rd. Ft. Wayne, IN 46805 https://www.myautismally.org/events/ 8znjqimgmkvo4km3db3jzfqp4hw244 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.

April 2021 • Special Needs Living

27

THE ABC’S OF IEP’S In our last issue, we discussed creating appropriate academic goals for students who qualify for

By Sheila Wolfe IEP Services an IEP (Individualized Education Plan). Not all IEP goals address “typical” school subjects. Many students with special needs have deficits in non-academic areas such as language, behavior, sensory processing, fine and/or gross motor skills, social skills, and emotional processing to name a few. It has been my experience that creating these goals presents a bigger challenge for the Case Conference Committee. Each child’s needs are different and specific. It is important to make sure the goals created in the IEP address that student’s skill level and need.

While SLPs (speech-language pathologists) are very adept at writing speech goals (which involve how a child speaks), it is a bigger challenge to write goals which develop language skills in a non-verbal, or language-delayed child. This process is extremely intensive and requires extensive services. It is often a struggle for parents to obtain an appropriate level of service from their school so that their child makes meaningful progress. Frequent standardized testing in this area can help evaluate what progress is being achieved.

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28 Special Needs Living • April 2021

Similarly, many students require social skill instruction. It is common for schools to create social skill classes or lessons for groups of students who all require help in this area. While this can provide some benefit to the students who attend, the skills are often not transferred to the natural environment because there is no process to prompt or track the skills to make sure they are being generalized. Parents need to be aware of what social skills are being taught and what kind of progress monitoring is being done. If the data is only being collected in the instructional environment, we would have no way of knowing if the student can use that skill in any other environment. Parents need to advocate for social skill instruction that is appropriate and meaningful for their child and insist that the skills being taught are practiced in the natural environment.

In addition, our students very often experience fine motor (handwriting, fasteners, shoe tying, dressing, etc.) and gross motor (walking, running, climbing steps, navigating different surfaces safely, and anything done in PE class) skill delays. Fine motor skills are addressed by an OT (occupational therapist) and gross motor skills are addressed by a PT (physical therapist). These skills are often downplayed when developing an appropriate IEP. It is critical that students receive these vital services whenever a documented delay exists. Providing early intense services can very often “close the gap” for many kids.

An OT would also provide services for students needing help with visual-motor integration. This is a critical skill in handwriting development and copying from the board. OTs are also responsible for addressing sensory processing issues. This is usually done through the provision of a “sensory diet,” which addresses the specific needs of the student. It is important for parents to know that a sensory program should be designed to be proactive and not reactive. By providing the necessary sensory input throughout the day, we can help keep a student in balance by assisting them in regulating their focus, mood, and emotions.

One of the most critical areas of need for many students with special needs is behavior. If you know or suspect your child is struggling behaviorally in school, request an assessment called a functional behavior assessment (FBA). This assessment involves careful observation of the student in a variety of environments. Data is collected during these observations, which we refer to as ABC data. “A” stands for Antecedent; “B” for Behavior; and “C” for Consequence.

By looking at accumulated data we can often see patterns between the Antecedents (something that happens immediately prior to the behavior), the actual Behavior, and the Consequence (the thing that happens immediately after the behavior.

Next month we will discuss in-depth how we evaluate and address behavioral needs appropriately in an IEP. In my experience, this can be one of the biggest challenges any Case Conference Committee faces.

Sheila A. Wolfe | IEP Services, LLC sheilawolfe@sbcglobal.net

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April 2021 • Special Needs Living

29

AUTISM & EMPLOYMENT A Struggle for Independence

By Matt Knight

My name is Matthew Knight. As of the publication of this article, I am a 28-year-old man with “high-functioning” autism. I am currently working at Amazon as an IT support associate.

While I consider myself be lucky to have full-time employment with one of the world’s largest employers now, trust me when I tell you that this wasn’t always the case. As one person with autism among millions of others worldwide, I’m certainly not the only autistic person that has struggled with education, employment, socializing, etc. I think that I can safely say that my experience with finding suitable full-time employment is both familiar and unique.

Over the course of five years, it was constantly beaten into me that the interviewing system itself is deeply flawed, with an inherent bias to extroverted and charismatic individuals over those that don’t have such traits.

As a result, I became more critical toward the world and less confident in myself and my ability to be a competent working professional equal to and/or above neurotypicals. I also started to just feel even more misunderstood than I ever had before, like I’m some weird alien who immigrated from Mars who will never be understood. accepted. I still feel like this, even today, but I certainly feel more at home working with competent professionals now at a respectable company than searching for jobs and being unemployed.

Originally, I earned my bachelor’s degree in political science with minors in history and information systems from the University of Indianapolis in 2015. I had a plan to enter politics and hopefully serve as a manager in state government, but, needless to say, I was very naïve about the field and what opportunities were available. Shortly

30 Special Needs Living • April 2021

after completing an internship with a small political think tank called Sagamore Institute following graduation from college, I decided to transition to IT because of its growth potential and my previous (albeit limited) experience with coding in both high school and college. Initially, I wanted to become a programmer, but after some lackluster boot camp experiences, I decided to transition again to IT hardware/software support. I have found more success in this field, even earning an A+ certification in 2017 which helped improve my prospects somewhat.

Some of the more notable short-term contracts that I have worked on over the course of the past five years while searching for full-time employment were with large employers like Anthem, Caesars Entertainment, Ardagh Group, Eskenazi Health, and Eli Lilly. I even started my own YouTube channel called Knight Bros Commentary (KBC) with my older brother Brad back in September of 2018. On it, we discuss various topics such as the military, politics, autism, sports, movies/TV, etc. Here is the link to our website if you want to find out more – https://knightbroscommentary.weebly.com/ Unfortunately, even with the second transition and numerous short-term contracts, I was still having trouble finding suitable full-time employment. In order to remedy this, I started doing the following: · Working with various government agencies and private enterprises specializing in job search and career coaching services. · Getting more technical training, such as coding certificates and CompTIA certifications. · Taking various career tests, such as the Predictive Index, Gallup Clifton Strengths, and the Extended DISC. · Completed an interview with RTV6 to help raise awareness about employment issues for autistic adults back in March of 2019. · Looking at transitioning to other industries, such as business intelligence, data entry, grant writing, the military, and law enforcement just to name a few.

Sadly, the numbers speak for themselves with regard to my job search over the past five years. As of June 2020, I had applied to 3,060 jobs and here are the results: · 2,283 (75%) where nothing ever happened · 574 (19%) just viewed my application

Brad and Matt Knight – Run a Podcast and YouTube channel

· 187 (6%) had offered me an interview · 27 (.88%) had offered me the job (but most of them seemed to be terrible fits for me for reasons I will explain below) · The three binders in the picture hold all of the notes I prepared for every single job that I have interviewed for at least once (on-site, skype/video, phone, etc.).

If am being honest with myself when it comes to my professional career, there are traits that I have developed over the years that have probably hurt me in the long run when it comes to my employment issues. Probably the biggest one that I can think of is getting mentally and somewhat physically exhausted after socializing with people for over an hour due to overanalyzing conversations. For me at the very least, this means taking in what people “say” and figuring out what they truly “mean” in a reasonably short time frame while also dealing with various types of distractions in the background such as loud noises, strong smells, bright lights, etc. As a result, I think that I simply don’t have enough charisma to effectively work within the system and I didn’t know how to improve said charisma, as I failed to really make much improvement in all of my mock interview sessions. During my fiveyear job search, I found that, due to nervousness, I would just end up just rambling when attempting to answer questions. It does take me a little bit longer to gather my thoughts, plan and organize myself in a way that “appears normal” despite what others may see.

as I think that it does as some people might see me, and others like me, as honest, authentic, and virtuous.

Matt Knight

The next trait I have “developed” is poor verbal communication skills in comparison to written ones. Even to this day, I wonder if my autism affects the way I interpret how someone physically speaks more so than neurotypicals as I do have a hard time communicating over the phone with someone. This is especially true if they have an accent, talk too fast, speak very softly, or any combination of those. As a result, I am far more likely to understand whatever message someone wants to send me if they send me digital text rather than trying to listen to them speak and spending a few seconds organizing my thoughts and decipher what it is that is said and what they actually mean via their tone.

Another potential hindrance is that I have a bad habit of occasionally just focusing my attention so deeply that the rest of the world just disappears until something happens to jar me out of it. Whenever I get into such a state of mind, it is just like the rest of the world simply doesn’t matter and the only thing that does is every task that has been assigned to me. While it may be true that many others on the spectrum are like me in this regard, I think that being detail-oriented isn’t that great of a trait to have in the long run. This is because, based on my observations at the very least, employers are not necessarily looking for “task-oriented” individuals but rather for “people-oriented” individuals or “culture fit.” This puts people on the spectrum at a disadvantage because many of us (myself included) tend to be more like the former than the latter.

Finally, I don’t suck up to authority figures or engage in office politics. I always try to treat people equally and hold everyone to the same ethical standards regardless of one’s social status because I think that is the right thing to do. Understandably, this mindset probably hasn’t helped me over the years, as many people who play the so-called game do tend to have relatively more success than what I have enjoyed so far based on what I have seen.

However, maybe this doesn’t hurt me as much

To this day, I still struggle with perfectionism that originated from my own insecurities. It is also very important to keep in mind that autistic people such as myself (and many others throughout history) have always struggled because we do not have the same communication skills (or perhaps more accurately, “style”), as the rest of the population. Oftentimes, we are perceived to be arrogant or stuck-up when we are really just confused and don’t know what to say because we haven’t finished our analysis of what others have said to us, so we either say nothing out of a fear that we get a negative response or say something “politically incorrect.”

Now, the real question is how can we modify the current system to be more “tolerant” of “neurodivergent” people, not just those on the spectrum.

Anyone who is neurodivergent or is a family member of someone who is neurodivergent knows how much of a challenge living with the disorder can be. In addition, this is often magnified by a potential lack of employment for people on the spectrum as many of us may tend to define ourselves by how we compare to neurotypicals. To this end, I do have some ideas: · Implement a more practical structure where job applicant(s) actually do the “job” under the supervision of the interviewers, especially for higher-level and/or more technically difficult positions (i.e. replace “traditional interviews” with technical “auditions”). Examples of this could be having applicants doing any of the following: · Create charts and make presentations from “mock” data · Create a presentation for selling a “mock” product · Design a “mock” landing page for a website · Write code for a “mock” app. · Troubleshoot and/or fix broken IT equipment

· Launch a “mock” social media campaign · Answer a phone call from a “mock” enduser with a tech problem or wanting to return a defective product · Take a multiple-choice test regarding possible scenarios that might occur within the job · Perform in a role-play incident where someone deals with a distraught customer or a person behaving erratically in a “mock” crime scene · Adopt portfolios across more industries where possible, such as programming, photography, website design, etc. · Having interviewers avoid the following types of questions: · Questions of a “personal nature” except when necessary (i.e. asking someone if they have a disability or if they have children so that they can be more accommodating if they were to be hired). · Questions of a vague and/or psychological nature that have no discernable connection to job tasks and responsibilities. An example of this would be “if you could be any animal/ athlete/etc., what would you be and why?” · Having interviewers use better “phrasing” of “behavioral” questions. An example of this would be “can you please tell me about a time when you experienced a massive disagreement with a boss or coworker and how you handled it.” · Having job applicants “work” alongside current employees on tasks during the interview/audition if possible. Jobs that require a government security clearance probably should be exempt from this.

Overall, I, among many others, think that the system must change if people of all backgrounds and circumstances are to have a truly equal opportunity to make something of themselves. Thankfully, many employers are starting to see that the current/traditional system for interviewing candidates for jobs is flawed and are changing their process to fit an increasingly “diverse” population. This must continue if the economy is to survive, as employers will struggle to find effective employees if they base their decisions based on old customs and not technical aptitude.

The time to start effecting meaningful change is now. Everyone, both neurodivergent and neurotypical, must come together in order to make this happen.

April 2021 • Special Needs Living

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special needs living – sponsor of the month

By Maria Smietana

Michelle Hennessee Sears believes in a family-centered approach when treating children on the autism spectrum.

“Family involvement is vital to the long-term success and growth of our patients,” she said. “We work with families to assess and discover the goals and skills that are of highest priority, knowing that the family unit is what makes an ABA therapy program successful. We will create an ABA therapy program that will work for your child and your family.”

A native of northwest Indiana, Sears earned her bachelor’s degree in psychology at the University of Southern Indiana.

After working in the mental health field for nearly a decade, she decided to pursue her master’s degree in applied behavior analysis (ABA), graduating in May of 2015. She and co-owner Kelsey Pumel opened Autism Center for Enrichment (ACE) in May of 2016. Sears became board certified in behavior analysis 18 months later.

32 Special Needs Living • April 2021

ACE moved to its first permanent location in 2019 in Greenfield, but continues to offer services in the home and in community settings as well. Currently, ACE serves families in Hancock, Marion, Johnson, Hendricks, and Hamilton Counties. In addition to Sears and Pumel, who also holds a master’s degree and is board-certified in behavior analysis, the clinic has an analyst who holds a doctoral degree in ABA. The practice additionally employs an operations manager and trainer.

Sears encourages parents of children on the spectrum to learn as much as they can about autism, and continuously advocate for themselves and their child. “Teach others how to get into your world and the world of your child to facilitate a better understanding of the special needs community,” she advises.

A perpetual student, Sears readily shares that she is always trying to learn new techniques for working with patients, reading the latest research in the ABA field, or participating in continuing education courses. She is happy to support Special Needs Living magazine

because it brings awareness to the community and serves as a means of support for families who often find themselves in an uncertain world.

When Sears isn’t running her business, she enjoys spending time with her husband and their four children, as well as her extended family and the fur kids — two dogs and two cats. She’s also a bit of a Food Network binger when she finds herself with free time.

Business Contact Information: ACE-Autism Center for Enrichment Michelle Hennessee Sears 190 W. Green Meadows Dr. Greenfield, IN 46140 (219) 742-2889 MichelleS@autismenrichment.com www.autismenrichment.com info@autismenrichment.com Michelle Sears

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

Kelsey

www.autismenrichment.com (317) 436-7080 | info@autismenrichment.com April 2021 • Special Needs Living

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I am committed to earning your trust and loyalty through my superior professional care, concern and communication. I am personally committed to each and every client, investing my time, energy and real estate market knowledge to ensure that I exceed your expectations at every level. I have a true passion and love for helping others, it's my ministry. Some of my strongest attributes are patience and genuine care. I work FOR you making sure that every decision made is in YOUR best interest. I welcome the opportunity to learn about you and your family and how I can best serve you.

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By Christina McGairk

Carmel Sensory Toy Store Owner Looking to Pass The Baton Sensory Play Date, located in Carmel’s Merchant Square, opened in August 2019. Owner Kate Broyles, who is a certified occupational therapy assistant, opened the store to provide a place where kids and parents can interact with various toys. “I’ve done a lot of occupational therapy sessions with families, so I got to see what toys were popular with the kids,” said Broyles.

The interactive sensory toy store, encased by calming blue walls, offers samples for families to interact with before they buy.

“I encourage parents to bring their kids with them so they can engage with the products.”

Yet, Sensory Play Date is more than a toy store. There is also an underwater-themed sensory room furnished with bubble wands, a sensory peapod, soft crash pads, and LED night light toys.

Although Broyles has had a passion for those with special needs for over 25 years, she fell in love with something else. A quaint bed and breakfast in Eastern Canada. She and her family plan to move there once the Canadian border opens up, which is why she is looking for new ownership for her beloved store.

“The price was right and the opportunity was too hard to pass on.”

Broyles said she and the Merchant Square landlords’ will work with the new owners to make sure the transition is as smooth as possible.

To contact Broyles about the store or ownership, she can be reached at (317) 810-1588 or by email at kate@sensoryplaydate.com.

April 2021 • Special Needs Living

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A Moment of Inspiration – By a Special Needs Mom

FOUR TRUTHS

For over a decade now, I’ve belonged to and been inspired by the amazing group of women who are fellow moms of children with special needs. This article incorporates bits of wisdom I’ve gleaned from this dynamic sisterhood as well as the insight that life and God have given me along my own journey. This month’s magazine will feature the first four truths and next month’s article will feature the remaining points.

By Carla Miller

1) You are not alone.

There are so many times when it seems like nobody gets your journey.

It’s easy to feel like nobody else will understand the numerous doctor’s appointments, the special diets, the medicines, the IEP meetings, the social cuing, the therapy sessions, the stress of school, the sibling comparisons, the meltdowns, the medical devices, the family dynamic challenges, the expenses, the daily decisions you make, and the never-ending stress you face. It can seem

36 Special Needs Living • April 2021

like no other family faces the financial costs, the emotional burden, or the hours and hours of time needed to parent and raise a child with special needs. BUT, there are thousands of other parents out there in the trenches of special needs, too. And they, like you, also are striving and giving their all to do the very best for their unique child. And when you meet, you will immediately connect. You will connect because they “get it,” and as a result, they get you.

And they will be a great resource and source of encouragement in your journey with special needs. Please remember, You are NOT alone.

2) There will be triggers; that is normal.

For some, it’s a report card filled with failing grades. For others, it’s a birthday party where nobody invited came. And still, for others, it is yet another loud meltdown in a public place. There will be certain situations that are triggers for you as a mother of a child with special needs. And when these trigger scenarios happen, they flood your heart with sadness, frustration, and despair. They remind you, yet again, that your journey in motherhood is different. And you may react to these triggers with tears, withdrawing, or maybe lashing out in anger.

Nearly all moms of kids with special needs have triggers. Triggers are very normal. But over time, and with strategies, the grip and power of these triggers can lessen, fade, and even disappear.

3) There IS such a thing as a mother’s intuition.

Society uses the phrase “mother’s intuition” often. But, a mother of a child with special needs understands this statement on an entirely different level. Often the

first to recognize that something “isn’t right,” that a particular medicine is causing issues, or that further testing needs to be done, is the child’s mother. Moms of kids with special needs have an extraordinary knack of knowing when something is going on with their particular child. Many times, this is before it can be detected, suspected, or diagnosed by traditional medicine. Trust your gut!

4) Sometimes it is necessary to fight.

One of the biggest roles of a mother of a child with special needs is advocacy. Whether questioning a diagnosis, seeking a second opinion, challenging a school policy, fighting an insurance denial, or championing a change in legislation, using your skills and energy to promote the best health, opportunity, and environment for your child is necessary at times. It can also be draining. At times it may be exhausting. And, for some, it is also way out of your comfort zone. However, equipping your child with all they need to be successful is very much worth it.

For those traveling a similar mothering road, my prayer is that these truths may resonate and encourage you. You are NOT alone.

For those who are friends, family members, co-workers, peers, and neighbors to these women, may this provide further insight into the hearts and lives of these special and incredible moms.

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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caregivers & healthcare corner

By Lisa M. Monge, MSN, RN

April showers bring May flowers!

It also brings us Autism Awareness Month! In fact, the fourteenth annual World Autism Awareness Day is April 2, 2021. On this day, you can expect the international community to ‘Light It Up Blue’, in recognition of people living with Autism Spectrum Disorder (ASD) and those who love and support them. What happens when the person living with Autism isn’t feeling well, or is feeling a little blue? An emergency department (ED) is often a place of stress and overwhelming for a patient living on the spectrum and their caregiver.

EMERGENCY DEPARTMENT VISIT:

Reducing Anxiety and Stress in the Emergency Department Spectrum Disorder or their loved one can do to reduce anxiety and stress for both of them.

Communicate the Diagnosis

Each and every person with autism is unique and each face a different set of challenges. If at all possible, call ahead to the ED and notify staff you are en route. Staff may be able to accommodate a private room or reduce waiting time. It is important to educate staff on whether the patient is verbal or non-verbal, hyper- or hypo-sensitive, and any triggers that may cause negative behaviors. Open communication with between the patient and healthcare team will allow for customized health care in an effort to reduce stress and anxiety.

Bring Comfort Items for Distractions

Research suggests the average number of emergency department encounters is approximately 30% higher for children with ASD, 70% higher for teens with ASD from ages 15 to 18, and twice as high for adults with ASD. Given the data, it is likely the person with ASD and their family will inevitably visit an emergency department at some time in their life.

The ED is busy, loud, unpredictable and has many bright lights. This environment is overwhelming for a neurotypical patient, but for the person living with Autism, this can quickly amplify an adverse behavior due to heightened sensory input or stimulations. Autism Spectrum Disorder is a neurological disorder that has an effect on communication and with the heightened sensory stimulations, the stress can be so overwhelming, it quickly can undermine their ability to tolerate the treatment they need. In the event a person with autism may require an ED visit, there may be a few things the person living with Autism

38 Special Needs Living • April 2021

Wait times can be long in an emergency department.

With the overwhelming environment, it is important the loved one remain positive and remember their mood can impact stress levels. Preparing a “fun bag” of items can be helpful! Dressing in preferred clothes instead of hospital gown can reduce sensory issues from clothing. Any items from home that are familiar that can allow for a less foreign experience are also helpful in reducing stress.

and their family. Visits to the ED, or any medical setting, can cause stress and anxiety. Being prepared for the encounter can optimize the patient and family experience; resulting in appropriate medical interventions and interactions, and ultimately allow the patient to receive the highest quality of care.

Nurses and Healthcare Professionals Can Do More

**a personal note from the author** While in graduate school, I began taking courses to learn about ASD and other developmental disabilities. I chose to create a personal philosophy regarding persons with developmental disabilities and how nursing staff and healthcare personnel should integrate disciplines to optimize healthcare potentials for all. I am reaching out to all providers in every setting to please come together as a community to reduce health disparities and improve the life for this unique population. Thank you, Nurse Lisa

A Call to Healthcare Professionals

Advocate, Advocate, Advocate

It is vital loved ones be the voice for their family with ASD if receiving care in the ED or any healthcare setting. They know the patient and it is vital to notify staff of triggers as well as techniques to cope with difficult situations. Be involved with care as much as possible! For example, administer the medication to your loved on with ASD, if allowed, if it reduces stress. It is also beneficial minimize encounters and cluster care. For example, instead of having an assistant get the vital signs and the nurse provide care, have the nurse obtain both the vital signs and provide essential care only.

Communicate, Distract, Advocate

Autism Spectrum Disorder is a life-long neurodevelopmental disorder. ASD has a substantial impact on the health and well-being of the affective individual

We, as nurses, must advocate for the family, community, teachers and healthcare providers to treat the patient and family as an entity and ensure care is integrated. All nurses, novice to expert, have a duty to acquire the knowledge, skills and attitude necessary to provide compassionate and appropriate care for this unique population. Nurses, or any healthcare provider who may encounter a patient with ASD, or any developmental disability, please consider advocating for the following • Nurse educators to introduce ASD and developmental disabilities to students through academia and clinical settings

• Clinical nurse educators to incorporate care of the patient with ASD into hospital orientation, individual training dependent on area of practice and enforce continuing education • Nurse navigators to assist all patients with ASD and their families in any aspect of care, through the whole process from beginning to end, throughout the lifespan of the individual • Nurse navigators to oversee military children with ASD with relocation to new states, to prevent long waitlist to establish care with providers, specialist, referrals, etc.

• Nurse Autism Advocates to be appointed to each state to collaborate with elected officials to oversee federal funds allocated specifically to ASD, differentiated from the Medicaid Waiver We have an obligation and an ethical duty to advocate for this unique population. Increasing education to ourselves and each other, integrating care and giving a voice to the silent will result in positive health care outcomes.

him entertained. Waiting can be very stressful.” – Amanda, mom of Mason

Tips and Tricks: A Mother’s Perspective “Not really ER but before my 10-year-old son had to go in for heart monitor and sleep study, I got him accustomed to the wires and tube by playing robot with him – we hooked him up with wires and tube and bought a dryer vent used to put over his arms and legs taped wires all over him told him it was to practice being a robot before we go to the hospital to make him a real robot... kinda silly but worked great.” – Colette, mom of 8-year-old Mikey

“My son is 8.

We explain everything that is going to Mason happen before it does. We also make sure to pack a few toys to help keep

“When I take my son to the ER, I always explain that he is non-verbal. That he has a very high pain tolerance.

I encourage nurses and doctors to talk to him with a calm voice just like they would a person his chronological age.

Moderate not shout or talk slowly because you think he can’t hear. He can hear very well. He just can’t speak.

Explain everything that you are going to do. Just like you would with any other patient.

Please please be kind to us parents. We are already running on an empty tank.

Lisa M. Monge, MSN, RN

A smile or understanding look goes a long way.

My son is 16 years old and has Angelman Syndrome.

He is hospitalized two to three times a year.

We have had some amazing doctors and nurses that have been our Angels and others that we pray for. We pray that they would have more compassion.

We moved to Indianapolis for our son’s medical care eight years ago” – Marisa, mom of J.R., age 16

Pictured above: J.R.(age 16), Marisa, J.J. and Henry (age 9)

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By Aaron Olson

On The

Spectrum A Discussion on Autism

The use of the phrase “on the [autism] spectrum” is growing in both the medical literature and as a colloquial phrase used by maladroit people to describe a similarly socially inept co-worker. With that said, in light of autism awareness month, we thought it would be helpful to shed some light on autism and who, or more appropriately “what,” falls on the spectrum.

Autism is generally thought of as a bio-neurological developmental disability that appears before the age of 3 and impacts the development of areas in the brain responsible for social interaction, communication, and cognitive function. The disorder is also associated with several serious comorbid conditions such as digestive problems and impaired motor function. In short, most people, until recently, associated autism with a serious developmental disability.

So how did we go from the term “autism” to describe a serious developmental disorder to Autism Spectrum Disorder, which can include very mild disorders that can be associated with functioning (and even high functioning) members of society?

The term autism was first used in 1908 to describe a subset of schizophrenic patients whose symptoms had many of the characteristics of what we today recognize as autism. In the mid-1940s autism started to be viewed as its own disorder and shortly thereafter Hans Asperger describes a “milder” form of autism, which came to be known as Asperger’s syndrome.

40 Special Needs Living • April 2021

It wasn’t until 1987 that “autism disorder” was added to the DSM with a checklist of diagnostic criteria, and in 1988 the movie Rain Man was released starring Dustin Hoffman as an autistic savant, which helped draw public attention to the condition. Although Asperger’s syndrome was added to the DSM in 1994, relatively few changes were made until 2013 when the DSM combined all the autism subcategories into one general disorder known as autism spectrum disorder. As such Asperger’s is no longer considered a separate condition. ASD is now defined by two categories: 1) Impaired social communication and/or interaction. 2) Restricted and/or repetitive behaviors.

This definition has led to a number of misunderstandings, particularly with people who aren’t part of the autism community, about what it is to be autistic. While ASD is considered to be a spectrum disorder characterized by impaired social interaction, it does not mean that every person who fails to exhibit some degree of social grace is “on the spectrum.” Additionally, there are a number of other disorders that might impede a person’s ability to interact with others, such as ADHD and bipolar disorder, that don’t necessarily land someone on the spectrum either.

The main takeaway from this should be there are hard minimum diagnostic characteristics associated with ASD and, even though the disorder exists on a spectrum, not every “autistic-like” behavior, in isolation, should be interpreted as a symptom of ASD.

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