Special Needs Living Feb 2021 Issue

living

Special Needs

February 2021

Indianapolis & Surrounding Areas

ON THE COVER:

BRIAN, LAURA, NOAH, OLIVIA GRAHAM – ART BY OLIVIA Inside: A Mother’s Promise No Legs Needed – Adaptive Hockey A Kid Again Meet the CEO of the Angelman Syndrome Foundation Be your own Valentine Sweetheart Sponsor Spotlight: Law Office of Elizabeth A. Homes, LLC Indianapolis Flames Alternative Baseball A Moment of Inspiration – Love Never Fails Sibling Perspective: Tyler and Caleb Ashby Pioneer Parents: Beth DeHoff Meet Nora – Service Dog for Zoe Local Events and More

CONNECTING - INSPIRING - EDUCATING - FAMILIES WITH SPECIAL NEEDS

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2 Special Needs Living • February 2021

I M P O RTA N T

N UMBE R S 317-977-2375

317-257-8683

Arc of Indiana www.arcind.org

www.n2pub.com Turning Neighborhoods Into Communities © 2021 Neighborhood Networks Publishing, Inc.

AREA DIRECTOR PUBLISHER

Jamie McCabe jamie.mccabe@n2pub.com

ASK: About Special Kids, Inc. www.aboutspecialkids.org 317-232-7770

Indiana Governor’s Council for People with Disabilities (GPCPD)

800-609-8448

Autism Society of Indiana

877-241-8144

Blind and Visually Impaired Services (BVIS)

812-855-6508

Indiana Resource Center for Autism

800-545-7763

Bureau of Developmental Disabilities Services (BDDS)

317-233-1325

Indiana State Department of Health

844-446-7452 800-545-7763

Bureau of Rehabilitation Services (BRS)

Indiana Statewide Independent Living Council (INSILC)

855-641-8382

Indiana Works

800-332-4433

INSOURCE http://insource.org/

Deaf and Hard of Hearing Services (DHHS) DHHSHelp@fssa/in.gov 800-622-4968

Disability Determination Bureau

888-673-0002

Division of Aging (IDA)

800-457-4584

Medicaid Disability

800-403-0864

Division of Family Resources (DFR)

317-232-7770

Medicaid Waivers

317-232-7800

Division of Mental Health and Addiction

800-772-1213

Social Security Administration (SSA)

317-925-7617

Down Syndrome Indiana

877-511-1144

Early Childhood and Out of School Learning (OECOSL)

317-466-1000

Easterseals Crossroads

911

Emergency

844-323-4636

Family Voices Indiana www.fvindiana.org

800-545-7763

First Steps

574-234-7101

IN*SOURCE www.insource.org

317-232-0570

Indiana Department of Education: Office of Special Education www.doe.in.gov/specialed

317-233-4454

Indiana Family and Social Services Administration (FSSA) www.in.gov/fssa/index.htm

1-800-772-1213

Social Security Disability Insurance (SSDI)

877-851-4106

Special Education Questions

317-871-4032

United Cerebral Palsy Association of Grater Indiana

800-545-7763

Vocational Rehabilitation Services (VR)

DISCLAIMER: Any articles included in this publication and/or opinions expressed therein do not necessarily reflect the views of The N2 Company d/b/a N2 Publishing but remain solely those of the author(s). The paid advertisements contained within the Special Needs Living magazine are not endorsed or recommended by The N2 Company or the publisher. Therefore, neither The N2 Company nor the publisher may be held liable or responsible for business practices of these companies. NOTE: When community events take place, photographers may be present to take photos for that event and they may be used in this publication.

February 2021 • Special Needs Living

3

Sponsor I N D E X Neighborhood

Thank you to all the supporters below who have chosen to partner with Special Needs Living Magazine. Because of them we are able to mail this publication to you free of charge each month!! They are delighted to help you with any of your needs. Please let us know if there is a company or organization that supports the Special Needs Community that you would like to recommend - Jamie.McCabe@n2pub.com ABA & COMPREHENSIVE SERVICES K1ds Count Therapy (317) 520-4748

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

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

FINANCIAL Munder Financial James Munder (317) 238-6621

Mindful and Modern ABA Therapies (317) 827-7777 The Indiana Institute for Behavior Analysis, LLC (317) 388-8131 ABA/COMPREHENSIVE SERVICES The Hope Source (317) 578-0410 ACCESSIBILITY PRODUCTS AMRamp (260) 519-0101 ASSISTANCE DOG Indiana Canine Assistant Network, INC. (ICAN) (317) 250-6450 ATTORNEY-WILLS/TRUSTS/ ESTATE PLANNING Law Office of Elizabeth A. Homes LLC (317) 660-5004 CASE MANAGEMENT IPMG - Indiana Professional Management Group (866) 672-4764

4 Special Needs Living • February 2021

WestPoint Financial Group Gordon Homes (317) 567-2005 FUNCTIONAL MEDICINE Wholestic Nutrition (317) 429-0111 GYMNASTICS Body by GymRoots Studio (317) 579-9300 HEALTH & WELLNESS LifeVantage - Team Richards Kristin Richards (317) 698-5264 Ritello Clifton Herbert (661) 317-6157 INSURANCE: AUTO/HOME/LIFE State Farm Josh Fields (317) 875-0013

INVESTMENT MANAGEMENT Dan Claxton Investment Advisory & Broker Dan Claxton (317) 250-8080 MOBILITY / ACCESSIBILITY CYA Mobility (317) 530-2541 NEUROFEEDBACK THERAPY Indy Neurofeedback (317) 888-8500 PEDIATRIC THERAPY Wee Speak (765) 446-8300 REGENERATIVE MEDICINE/STEM CELL THERAPY Destination ReGen (317) 522-1980 SCHOOL Dynamic Minds Academy (317) 578-0410 SPECIAL EDUCATION CONSULTING IEP Services, LLC. Sheila Wolfe (317) 573-9610 SUPPORT SERVICES Easterseals Crossroads (317) 466-1000

publisher’s note I want to start out by sharing that it has been such a blessing to publish this magazine for you each month. I am so honored to do this and thankful for all who have chosen to share their story.

I hope you have been inspired by each story as much as I have.

I love that we can be real and raw about things. It is not always rainbows and butterflies, so to speak. There are hard days, challenging days, and days where we are feeling overwhelmed, alone, and isolated. This is exactly why I wanted to get this magazine out to the community. Stories can shift perspective and give hope and inspiration.

There is an instant connection when talking to someone who just gets it.

If you have a story you would like to share in a future issue, 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.

We would love to include more adults with special needs. Having a son with special needs myself I often wonder what the future looks like and what things are out there to help him when he is older. I know that hearing from older individuals and families who have been there before will be very helpful for the younger families. If you feel called to share your story about this and share organizations that have helped you along the way we would love to hear from you at Specialneedslivingindy@n2pub.com.

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

We would also love to include stories of anyone who is involved in Special Olympics, has a unique talent or gift, or who has special needs and runs their own business. We would be delighted to share your story to inspire others.

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.

Huge thank you to all the supporters helping to make Special Needs Living possible monthly. If you would like to be involved in any way, or for more information on how you can support or sponsor, please email me Jamie.McCabe@n2pub.com.

We hope you enjoy the February issue of Special Needs Living. We welcome feedback and are excited to bring this magazine and resource to you each and every month!

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

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MEET THE Special Needs Living

TEAM

JAMIE MCCABE Publisher & Area Director

BRITTANY LOWE Event Executive

HEATHER GREGG Photographer 21 Vines Photography

MARIA SMIETANA Editor & Writer

LEAH PARKS Knightingale + Willow Photography

WRITER & CONTRIBUTORS

CARLA MILLER

DEANDRA YATES

ERIN BOAZ

LISA MONGE

AARON OLSON

PAUL HATHCOAT

ANGELA ARLINGTON

SHANNAN PENAFLOR

SHEILA WOLFE

6 Special Needs Living • February 2021

LAURA SPIEGEL

MAUREEN MARSH

promotions

THIS MAGAZINE IS FOR YOU - BY YOU

TO SUPPORT & CONNECT YOU HERE IS HOW YOU CAN BE INVOLVED HAVE A STORY TO SHARE

ACCOMPLISHMENTS/ACHIEVEMENTS/MILESTONES

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.

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.

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

CALLING ALL 501C3 ORGANIZATIONS THAT SUPPORT THE SPECIAL NEEDS COMMUNITY

Each month we will highlight a nonprofit for free to let the community know more about how they support and impact families and individuals with special needs.

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

REFERRAL PROGRAM

We have a referral program that pays a $100 bonus to anyone who personally connects us with a business or organization that chooses to support Special Needs Living.

Please let us know if there is a company or organization that supports the Special Needs Community that you would like to recommend – Jamie.McCabe@n2pub.com.

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).

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.

February 2021 • Special Needs Living

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Amanda Moore & her Family – Adam, Jackson & Baden meet the ceo of the angelman syndrome foundation

By Aaron Olson

When Adam and Amanda started thinking about starting a family, they didn’t consider the possibility of having to go through fertility treatment at first. But after two years of what Amanda calls “riding the fertility treadmill,” the Moores decided to change direction and adopt. After searching for well over a year, they were eventually given the opportunity to adopt twins, Jackson and Braden.

Initially, everything was fine, but as time progressed, Adam and Amanda couldn’t help but notice striking differences between Braden and Jackson’s development. Amanda went so far as to say, “[at a certain point] the only thing the two boys had in common was their birthdate and shoe size.” Then, one cold January morning, Jackson began losing consciousness for split seconds at a time. They noticed him briefly go limp while he was crawling and then again while they were holding him. As soon as they realized the split-second fainting spells weren’t something else, they immediately rushed him to the hospital.

This was Jackson’s first seizure, and he would continue to have countless more over the next 12 months. After doing two overnight EEGs and a blood test, Jackson was diagnosed with Angelman syndrome (AS).

Angelman syndrome is a genetic disorder caused by a lack of function on part of chromosome 15 inherited from a person’s mother (a damaged chromosome 15 from the father is known as Prader-Willi Syndrome and has a different set

8 Special Needs Living • February 2021

of symptoms). Angelman Syndrome mainly affects the nervous system and the primary symptoms include a small head and specific facial appearance, intellectual disability, limited or no speech, developmental impairment or delay, seizures, sleep problems, and physical impairments including balance and movement problems. Children with Angelman Syndrome also display “atypical frequent laughter/smiling, atypically happy demeanor, and easily excitable personality.” The disease was previously called “happy puppet syndrome” due to many of the motor impairments causing them to move like a marionette, but the term has largely been abandoned as it is considered pejorative. AS is typically diagnosed based on symptoms and is then confirmed with an EEG and genetic testing.

For the Moore family, the diagnosis was initially devastating. Amanda remembers sobbing for the life Jackson could have had compared to the life he would end up having, and she remembers feeling grateful her husband, a nurse with Community Health Group was able to stay strong and ask the right questions. After several days of grieving, the family decided to take action. Amanda called the Angelman Syndrome Foundation hotline and asked

We Love Kids!

to get involved, and within a week she was on the board. After two years, she is now the CEO. The Moores live in Fishers. Braden and Jackson are 5 and they have a pet beagle lab mix named Stella. One of the more interesting symptoms of Angelman syndrome is an extreme interest in water and is one of the things Jackson shares with the rest of the family as they spend countless hours at the YMCA swimming pool and other aquatic venues. While the family is working toward being able to take vacations, as Jackson is unable to spend extended periods away from home, they do celebrate “Gotcha Day� on September 18 to commemorate the day the boys were officially adopted. In sharing their story Amanda hopes to accomplish two things: The first is to provide a cautionary tale about knowing when to get off “the fertility treadmill� and pursue other alternatives as these treatments can be extremely expensive and don’t always work. The second is to bring attention to the Angelman Syndrome Foundation. More information can be found at www.angelman.org.

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9

4 Reasons Why Writing Composition May Be Hard for Your Child Nikki Gray, MA, BCBA, LBA

As a parent, teacher, or behavior analyst, you may have encountered situations where presenting a writing assignment to a child who has a developmental or intellectual disability has led to hours long problem behavior.

These behaviors can range in severity from sitting in silence and refusing to complete work, to calling the work stupid, joking around and getting peers off task, to breaking pencils, ripping papers, hitting, throwing desks, to physical aggression. There are 4 areas that can be assessed to assist these learners to becoming more fluent and confident in their ability to complete writing assignments.

1. Fine Motor. If the student is using an improper grip with a pen or pencil or not typing appropriately with a keyboard, the physical act of writing or typing can cause pain. Correcting pencil grip and teaching keyboarding to fluency are ways that the lack of fine motor skills (as they relate to using a writing utensil and keyboard) can be eliminated as a barrier to completing written tasks.

2. Delays or deficits in naming items. Children who have strong and fluent naming skills, including categorizing and telling features and functions of items, are able to better answer WH questions after they read. For example, a learner who can name a cat when they see it as well as name the features, functions and class of a cat are better able to answer a WH question if told, “the cat scratched at the door.” The child is able to answer this because they have learned that a cat can live in a house, a house has doors, a cat has claws and that claws can scratch. When a learner is unable to label and categorize items, it impacts their ability to answer WH questions and to build on those skills to compose text.

3. WH questions Discrimination. Answering WH questions involves the child knowing that who is referring to a person, where is referring to place, when is referring to time, and what is referring to a noun. If a child reads the sentence, “the cat scratched at the door,” answering a WH question may be difficult to answer without the ability to discriminate what the question is asking. The child may require additional supports for discriminating these questions.

4. Delays or deficits in conversational ability. Dr. Pat MCGreevy writes in his book, "Essentials for Living," that most learners will not be able to comprehend text at a level that is higher than their

10 Special Needs Living • February 2021

everyday speaking ability. He writes that spelling words (above their conversational ability) becomes a rote response, and reading words becomes “word calling” with no comprehension taking place. The child will be able to read and spell the word, but because are not using the word in everyday conversational language, they will not be able to compose text related to the word.

Many skills go into a student being able to produce a written response. We are often attempting to decrease problem behavior related to composing text/writing assignments without first analyzing and assessing what the text is asking the learner to do and if they have the skills to do it. Many people view ABA as a therapy that is only for children under the age of 7. ABA is beneficial for older individuals and one of the ways is teaching the skills identified in this articles so that children are successful and independent when given writing tasks in the educational setting.

For more information, contact us at our Indy location by calling 317-388-8131 or our Evansville location at 812-636-1533 or visit us online at www.tiiba.org.

MEET NORA –

SERVICE DOG FOR ZOE

By Zoe Fritz

What do you enjoy most about having a Service Dog?

What I enjoy most about having Nora in my life, is that she helps me whenever she can and she just makes life so much better.

I never knew a dog could have so much personality until I met Nora. She is so kind to everyone and every creature or animal she encounters.

What is your Service Dog’s name?

Nora Jean is her name and we are not quite sure how she got it but we do know that she is very special. Nora is a full blooded black Labrador Retriever.

Do they have any special talents or quirks? What have been the benefits of having a service dog?

Nora is an autism service dog, so she helps when I am anxious.

For example, when I fidget with my hands, she will nudge me with her nose. The greatest benefit of having Nora is having someone to go through life with step by step. She is always there for me and always there to cuddle with.

How did they come to join your family? Tell us how you got the service dog and how the process went? How has having a service dog helped you?

I was on a waiting list for around four years for a service dog, and when I got picked for Nora, I literally cried happy tears.

Nora is an ICAN Service Dog. When I met Nora, I knew we were going to have a great connection. Having Nora has helped me more than words can explain. Taking Nora with me makes me feel more confident to take on new adventures and to go to new places. Without Nora, I never would do anything outside of what I do on a regular basis. She makes me feel confident that it’s ok to be myself. She’s motivated me and helped me throughout high school and I even took her to my high school graduation. When I was too nervous to do something on my own, I could always do it with Nora.

Photo credit: Liz Kaye Photography

Send the LOVE with PUPPY LOVE for Valentine’s Day! Puppy Love Valentines is a unique fundraiser that supports ICAN’s mission.

Our dogs-in-training deliver Valentine gift boxes to people at work and home throughout the Greater Indianapolis Area!

Our deliveries fill up quickly, so don’t delay in ordering! In addition to gift boxes, we are also offering special romantic Valentine packages! To learn more, visit icandog.org, call 317-672-3860, or email brynnee@icandog.org.

Any funny stories to share?

We were in English class and Nora knows a funny trick called “blah, blah, blah” where she will open her mouth slightly three times to make it seem like she’s saying it, and she did that while the teacher was talking to us. Nora is super spoiled. She has a collar for every holiday.

Deadline to order is February 8th!

5100 Charles Court | Suite 100 Zionsville, IN 46077

www.icandog.org February 2021 • Special Needs Living

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no legs needed

By Ashley Caveda

A New Athlete’s Intro to

ADAPTIVE HOCKEY

The first time I was on the ice, I could still walk. I was 6 years old and though I tried gliding my skates over the surface of the frozen water, they moved only in stutter stops. My friend Allison sailed past me and waved, but I couldn’t communicate that same easy motion to my own feet. Now, I am 35 years old — 29 years into a spinal cord injury after a car accident left me paralyzed as a child. My injury is high and my balance is negligible. Most of the time, I cheat by counterbalancing with my head if I have to reach for something.

diehard Chicago Blackhawk fans and, by blood, I suppose I was, too.

But I never actually touched the ice again until this past summer.

Apart from a brief tenure as a wheelchair soccer player when I was 12 and occasionally arm-wrestling the boys in my seventh-grade drama class, I never really took to sports. For the past couple of years, however, I’ve participated in various sports clinics offered through the Rehabilitation Hospital of Indiana (RHI).

With subsidized costs and often world-class athletes and coaches to show us the ropes, I felt comfortable trying new things. I tried scuba diving, boccia ball, hand-cycling, archery, bowling, adaptive sailing, table tennis, fencing, and, most recently, sled hockey.

An enthusiastic man — Coach Duane Weber — introduced himself when I arrived and assured me it was okay that I had no previous experience. Looking around the Indy Fuel Tank, I saw two little girls — 10, maybe 12 years old — playing sled hockey. They were dynamos in the rink, racing around, light on the ice, their legs strapped tight in their sleds. They each held a stick in their right hand and another in their left hand; the curved part meant for hitting the puck was pointed toward the ceiling rather than touching the ice. The bottom ends of their sticks had four spikes. The girls thrust both sticks forward, spikes down, digging them into the ice and propelling their bodies on the skated sleds forward, over and over, faster than seemed possible. When one came upon a puck, she flipped the stick, hit the puck underneath her own sled, passing it to the stick in her other hand, and then she slammed it into the net. I was in awe of the skill contained in their tiny bodies. I knew there was no chance I would be able to keep up.

In his youth, my father, a native of Cuba, was a semi-pro hockey player — the Ice Cuban, as his friends called him. Later, he took up coaching my older, able-bodied brother’s hockey team. They were

Getting fitted for my own gear was, in a word, comical. Adaptive hockey volunteers pulled too-large chest and shoulder padding over my head and strapped on too-small elbow pads and helped

12 Special Needs Living • February 2021

leverage, but could feel how close I was to getting the sled’s skate back up again, if I could just push past the last half inch.

I tried a few more times and finally succeeded. I couldn’t stop grinning.

Towards the end of the clinic, our coach had us face off in a short game. I was sitting near the goal when someone from the other team lost the puck and it flew toward the board behind the net. One of the other team’s players raced towards the puck and I moved as fast as I could in her direction. I didn’t think I could reach it before her, so I settled for crashing into her sled instead. I flipped over on top of her, and we both started laughing. It took us at least 45 seconds to extricate ourselves from each other. By the time we did, one of my other teammates had picked up the puck and moved it to the other side of the rink.

me twist Velcro around my calves to secure my shin and knee guards. We skipped the hockey pants and just pulled what looked like leg warmers over the padding on my legs.

I then chose an enormous neon green jersey with the possibly overzealous words “HIGH OCTANE” emblazoned on the chest.

Helmet and gloves on, my friend Adam and another volunteer lowered me into a sled.

The sides were tight around my hips and thighs. They strapped my legs to the metal bar extending from the sled, handed me my own two spiky hockey sticks, and shoved me onto the ice like I was a bird being ejected from the nest. I tried to emulate what I’d seen, using the sticks to pull myself forward, but instead of the graceful action I’d witnessed from the two girls, I felt heavy and slow, like I was attempting to pull my body up a rope ladder and gravity was winning. My shoulders and triceps, unaccustomed to this repeated effort, started to burn, and I had to take frequent breaks to pant for air. Initially freezing when I got on the ice, I could feel the heat rising in my cheeks with the exertion.

Sweaty hair fell into my eyes and tickled my forehead.

I watched the other newbies on the ice while I caught my breath. There was an assortment of men and women and children wearing an array of non-matching jerseys. On the ice, it was harder to tell what everyone’s disability was. I watched one young man tip over as he turned corners, but he was quick to right himself with his arms and keep moving. Even if he was a novice, he was strong. I tried taking my own corner and tipped over as well. Even through my gloves, the closeness of the ice made my fingers go numb.

I pushed my fists into its frigid surface, trying to get myself upright. I didn’t have much

When we got back off the ice at the end of the game, I took off my helmet. My hair was a rat’s nest and my face was shining.

Coach Duane told me I did a great job and said he was glad I’d come. The woman I’d crashed into, my new friend, who goes by the nickname Tiny, asked, “So ... are you going to join the team?” At the start of the day, I never thought I would consider such a thing. How could I? I had no experience and certainly wasn’t an athlete. I’d seen other people with disabilities play sports, and I knew I didn’t measure up. But over the course of that four hours, I was so physical, crashing into walls and people and the ice, pulling myself harder than I thought I could, gliding across the frozen surface like I’d tried to do on that pond as a child. Only this time, I succeeded.

Inches from the ground, I picked myself back up every time I fell that day — and I loved it. “Yes, I will join,” I told my friend.

And with those words, absurdly, I was suddenly an athlete with a team and a coach. Now, when people react with surprise that I’m on a hockey team, I smile with a shrug and say, “I’m a jock now.”

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.

February 2021 • Special Needs Living

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impact supporters

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

Heather Gregg – 21 Vines Photography – 317-345-7687

Portrait Photographer – I love to photograph families and children. I’m available for seniors, engagements, maternity, newborn lifestyle, cake smash, headshots, extended family sessions and more!

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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.

14 Special Needs Living • February 2021

W H A T I S Sesame/East Syndrome?

By Maria Smietana

EAST (Epilepsy, Ataxia, Sensorineural hearing loss, and Tubulopathy) syndrome, also known as SeSAME (Seizures, Sensorineural deafness, Ataxia, intellectual (Mental) disability, and Electrolyte imbalance) syndrome, is an inherited condition. Caused by one or more mutations in a gene known as KCNJ10, EAST/ SeSAME syndrome is an autosomal recessive trait. Autosomal simply means that the gene is found on one of the 22 numbered human chromosomes, as opposed to the X or Y chromosome.

Recessive traits are those that are only passed on when BOTH parents carry the mutated (non-functional) gene. This mutation is so rare that the likelihood of two carriers finding each other and having children is almost nonexistent – the chance of having a child with EAST/SeSAME syndrome is less than one in one million. A medical review published in 2019 stated that less than three dozen children across the world had been diagnosed with this syndrome since it was first described by researchers in 2009.

The KCNJ10 gene is responsible for the way potassium moves into cells, especially in the brain, ear, eye and kidney, a process that is critical to the normal functioning of those organs. When potassium channels don’t function properly, it sets off a domino effect that ultimately results in the group of symptoms that make up EAST/SeSAME syndrome.

Which aspect of the syndrome appears first varies from patient to patient, but because we are a highly vocal species, parents tend to notice quickly if their newborn does not respond to sound. Ataxia presents itself as a baby who feels weak or “floppy.” Ataxia is a broad term that describes poor muscle control, impaired balance and coordination, lack of fine motor control, difficulty eating and swallowing, abnormal gait, and abnormal eye movement. A little later, ataxia becomes obvious as the child struggles to grasp and hold objects and shows delays in crawling, walking, and talking.

Seizures, which usually occur between 3 and 9 months, are the tonic-clonic (grand mal) type, also seen in many other conditions.

Tubulopathy describes an abnormality of the tubules inside the kidney. We primarily think of the kidneys as the organs that remove waste products from our bodies, which we excrete in our urine. But the tubules are also critical in regulating the flow of minerals, such as potassium, sodium, and calcium, necessary for our cells to function. Most EAST/SeSAME patients also exhibit delays or impairment in intellectual development, especially if

their ataxia substantially interferes with speech, but with appropriate support, many function only slightly behind their peer group.

While there is no cure for EAST/SeSAME syndrome, all its component conditions respond to treatment, especially if intervention starts early. Hearing aids and cochlear implants restore lost hearing and help with speech development. Various anticonvulsants are available to treat seizures, and mineral supplements help potassium, sodium, calcium, and other electrolytes to stay in balance. Therapies, including physical, occupational, and speech, are employed to help develop motor skills and communication and facilitate learning.

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February 2021 • Special Needs Living

15

sponsor of the month

By Maria Smietana

Elizabeth “Liz” Homes has a message that she wants to get out to all special needs families: securing the future for your loved one with physical, cognitive, or emotional challenges doesn’t need to be a painful process. “Planning does not have to be scary. You don’t know what you don’t know until you know what you don’t know,” she likes to say. “You do not have to be alone through this process, so please don’t rely on Google for your professional advice. While it is good to educate yourself ahead of time, consulting with a professional not only assures that you won’t miss something really important, but also that the right plan is put in place to care for your loved one.”

A native of Carmel, Liz received both her BA and MBA from the University of Indianapolis before earning her JD from the McKinney School of Law at Indiana University. Choosing to concentrate in estate planning and elder law with a focus on special needs families “comes from an honest interest and passion,” Liz said. “My younger brother, Matthew, who has Crohn’s disease, dyslexia, and autism, was born when I was 9. I had always wanted a brother and we had an instant connection. In 2010, we almost lost him due to a Crohn’s flare but, fortunately, he had excellent doctors who helped save his life.”

Liz never forgets that her business serves people first. “We do our best to not make any assumptions but to listen to our clients and respect their goals, wishes and plans for themselves and their loved ones with special needs,” she said.

Once the client’s needs and wishes are known, Liz helps by putting the proper plans in place so that they can protect and advocate for their loved ones with special needs. That can mean drafting wills, special needs trusts, or power of attorney documents, and when appropriate, setting up guardianships. “It is not a sprint, it’s a journey, which is about both the path walked and the destination,” she said. “It is ok to ask questions to make sure that you have put the right plans in place for yourself and your loved ones.”

As a special needs attorney and family member, it’s natural for Liz’s firm to give to several organizations that support people who have special needs. The Joseph Maley Foundation serves children of all abilities and does a wonderful job of including everyone in their activities. Down Syndrome Indiana hosts several support group events, Buddy Walks and tons of other fun things. Autism Society of Indiana and Easter Seals Crossroads also hosts support groups and events throughout the year. “When possible and helpful, I contribute to various events for these organizations and many more,” Liz said. “I also volunteer my time speaking to various groups to help educate about special needs planning, guardianships, and more.”

When she’s not practicing law and running a business, Liz de-stresses with Hot Yoga at the Hot Room. During the pandemic, she hasn’t been able to go to the studio as much as she would like, so she has been learning how to practice yoga at home virtually. During the pandemic, Liz enrolled in Original Hot Yoga Teacher Training and now teaches at the Hot Room once a week and subs for fellow

16 Special Needs Living • February 2021

Liz right after she taught one of her first official original hot yoga classes

teachers as much as her schedule allows. “It is wonderful to give back to the community that has given so much to me and others. It is so much more than working out, the Hot Room is family. Regardless of the crazy year we have had, it has been nice to learn more, invest in my practice and serve others.”

Liz credits her parents with supporting and encouraging her and her brother in every aspect of their lives. Her mother, Alice, is a nurse, and her father, Gordon, is a certified financial planner with MassMutual. He turned his business focus to helping special needs families after Matthew was born, modeling a niche approach that Liz would follow with her law firm years later.

Liz remains very close to Matthew, who is now in his mid-20s.

“My brother has added an extra level of sweetness to my family’s life that we would never have been able to appreciate otherwise,” Liz said. “He’s an incredible human being and a very hard worker who is determined to help others. He is the reason why I focus my practice largely on helping families that have loved ones with special needs. I get to help families like mine every day and it is an honor and privilege to do so.”

Liz and Matthew

Special Needs Planning & Elder Law Attorney

Here to help you put plans in place to give you peace of mind.

Elizabeth A. Homes is a special needs planning and elder law attorney. She has been licensed and practicing law since May of 2014.

Her practice at the Law Office of Elizabeth A. Homes LLC is focused on Special Needs Planning, Guardianships, Elder Law, Estate Planning, and Probate Work. This includes Wills, Powers of Attorney, Advanced Directives, Trusts, Trust Administration, Medicaid Planning, Special Needs Planning, Guardianship, and Probate. She is admitted to practice law in the State of Indiana.

We ask "What If?" so you don't have to ask "What Now?"

Business Contact Information: Law Office of Elizabeth A. Homes LLC 10412 Allisonville Rd., Suite 200A | Fishers, IN 46038 317-660-5004 ehomeslaw.com | elizabeth@ehomeslaw.com

Elizabeth A. Homes, Esq., MBA ehomeslaw.com | 317-660-5004 elizabeth@ehomeslaw.com 10412 Allisonville Road, Suite 200A Fishers, Indiana 46038

February 2021 • Special Needs Living

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provide insight into the needs of the student beyond the medical diagnosis.

THE ABC’S OF IEP’S As we say goodbye to 2020 (good riddance!) and ring in the New Year, many of us have spent

By Sheila Wolfe IEP Services some time counting our blessings. We all count our loved ones with special needs as one of those blessings, but this blessing is also one of our most fundamental challenges in life. To help you best meet that challenge, first, you must identify and understand all the needs present in your special person.

When referring to those needs in “school-speak,” we are discussing the student’s Present Level of Performance (PLOP). This can also be referred to as the student’s present levels of academic and functional performance. The specific list of needs for every child is unique to that child.

There are numerous sources for this information. The diagnosis(es), if you have one, is one piece of that puzzle. Most doctors will include a list of recommendations with any assessment report they write. If this is not part of the report, make sure to ask the doctor to provide this. These recommendations will

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18 Special Needs Living • February 2021

Needs can be classified into some common areas which must be addressed appropriately in the Individualized Education Plan (IEP) for that student. The areas correspond (or should correspond) to the educational evaluations completed by the school on the student to develop a precise level for each of these areas of need. The school must assess the student in all areas of suspected disability. Among the areas tested (as appropriate) are development, cognition, academic achievement, functional skills, adaptive behavior, communication, fine and gross motor skills, sensory processing, vision, hearing, social and emotional functioning, and any relevant medical information.

The CDC’s website has a printable table of developmental milestones beginning at 2 months and ending at 5 years old. You can access this information at https://www.cdc.gov/ncbddd/actearly/ milestones/index.html. Completing checklists like this can help parents and school personnel understand the delays present in the student. This is especially helpful for new parents who may not have previous experience to draw upon when trying to determine if their child has any developmental delays.

It is important to emphasize that some students do not have any academic needs (meaning they are able to complete grade-level work), but they may still have needs which would qualify them for an IEP. Often those needs are social, emotional, or behavioral rather than cognitive. Parents need to be experts in the needs of their child and know about their educational rights. Any need that requires special education qualifies the student for an IEP. Schools are required to meet ALL the needs of any student who qualifies for special education.

If the nature of the student’s need does not require special education, but does require accommodations or related services, the student can be served through a 504 Plan. This is a written plan which outlines the supports and accommodations a school will provide to “level the playing field” for any student who may be operating at a disadvantage as compared to his peers. An example may include a student who has a diagnosis of ADD or ADHD. In most cases, the school should provide these students with additional supports for recording and turning in homework, prompting them to stay on task, and help with organization among other possible supports.

It is up to the Case Conference Committee to review all available information on the PLOP of each student to determine if the student qualifies for an IEP, a 504 Plan, or does not qualify as a student with special needs. In any situation, if a parent disagrees with the school’s evaluation and reports on the student’s PLOP, the parent has the right to ask for an independent assessment at the school’s expense.

We will discuss this topic more in next month’s issue.

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

Heart SOS

by Julie Gordon, MSW, LCSW

It is an honor to have the opportunity to support Special Needs Living Magazine while giving back to the community with any knowledge and experience I can share related to mental health and wellness of individuals with ASD and their families.

While this column will be in the context of ASD, most topics will be helpful to any family impacted by related challenges.

Part 1: Hope, Love & ASD

The desire for belonging and loving relationships is innate to all of us. When we struggle to find, maintain and cultivate that, we end up feeling isolated, depressed and lonely. Relationships are essential for mental health, well-being and quality of life.

Relationships are hard. We all know that. Relationships are extraordinarily harder for individuals on the Autism Spectrum. People are complex, nuanced and unpredictable. Relationships are so dynamic that there is no set of “social skills” that can be trained to make a person proficient. While helpful to black and white thinkers on the surface, human beings cannot learn to connect and relate with others by memorization of social rules. We all develop and learn to think through our shared experiences and interactions with our parents, caregivers and/or siblings. This critical dance begins with a communication feedback system called co-regulation. Through a series of joint engagements, we are guided by the “experts” in our lives to think, play, adapt, problem-solve and process important information around us. Then, we begin to communicate to “read” others, express ourselves and repair misunderstandings that enhance our relationships. A deeper perspective-taking of others, a personal sense of self and increased independence to self-regulate emerges and we can begin to collaborate and elaborate our skills with others. Until we have mastered this process with a trusted caregiver, we will continue to struggle with peers, coworkers and romantic partners. Research tells us that with ASD, a Neurodevelopmental Disorder, there are specific underdeveloped neural networks that impact the individual’s social and occupational daily functioning. The core areas affected by ASD are responsible for behavioral and executive functions, including: co-regulation, emotional engagement, episodic memory, flexible thinking, informational processing, joint attention, self-awareness, self-regulation, social cognition, social communication and social motivation. For individuals with ASD, while their parents were providing the necessary engagement for the development of these skills, those neural connections did not wire to encode the experiences properly. Without episodic memories of successful interactions to pull from, individuals will experience recurring “failures” with others. This is a major factor in the depression comorbidity rate being 4X higher for individuals with ASD, leading to a domino effect of stress, anxiety and trauma. Learning through secure relationships is required for development and development is required for learning complex relationships. Therapies must focus on restoring co-regulation, not just intervening on the behavioral symptoms manifested. There is hope. When broken down into smaller developmental steps with a qualified clinician, individuals with ASD can have safe, positive experiences necessary to develop the competence and confidence to initiate, maintain and repair friendships that they so desperately want and deserve.

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.

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February 2021 • Special Needs Living

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Diabetes is the seventh leading cause of death in the United States.

According to the Centers for Disease Control and Prevention, about 29 million people in the US currently have diabetes. Still, as many as 8 million are not yet aware that diabetes is affecting their health.

The Functional Medicine Comprehensive Diabetes Panel can help identify individuals with insulin resistance or pre-diabetes who are at risk of developing diabetes. This panel incorporates a complete blood count, a comprehensive metabolic panel, and a complete urinalysis. Also included in this panel is antibody testing for type 1 diabetes, hemoglobin A1c with average glucose, GlycoMark, and C-peptide. Another critical component in this panel is a nutrient assessment of vitamin D, zinc, magnesium, as well as the advanced NMR LipoProfile.

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20 Special Needs Living • February 2021

Events provided by : Brittany Lowe Event Executive

local events

Important Note: Prior to attending any events please be mindful of any COVID-19 restrictions. Please review the state mask covering executive order. There are exemptions within the order that include children under 2 years of age should not wear a face-covering due to the 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 below listed details before going from contact info provided below in case the 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 70th NBA All-Star Game Feb. 14, 2021 Time: TBD Bankers Life Fieldhouse 125 S. Pennsylvania St. Indianapolis, IN 46204 Contact: 317-917-2500 https://www.visitindy.com/indianapolis-nba-all-star-game Holes November 29, 2021–May 30, 2021 Indianapolis Museum of Art at Newfields 4000 N. Michigan Rd. Indianapolis, IN 46208 Contact: 317-923-1331 https://discovernewfields.org/calendar/holes

Powerful Women-Contemporary Art from the Eiteljorg Collection November 29, 2020–March 21, 2021 500 W. Washington St. Indianapolis, IN 46204 Contact: 317-636-9378 https://eiteljorg.org/exhibitions/powerful-women-contemporary-artfrom-the-eiteljorg-collection/

Visiting Artist David Slonim: Story Maker Workshop Feb. 12 and Feb. 26 2pm–2:45pm and 3pm–3:45pm Children’s Museum Indianapolis Preschool Hallway 3000 North Meridian St. Indianapolis, IN 46208 Space is limited to 10 people. Seats reserved at the concierge desk. https://www.childrensmuseum.org/visit/calendar/view/844/2021-02-12 Visiting Artist Israel Solomon Color our city: Art Workshop Feb. 27 and Feb. 28 2pm–2:45pm and 3pm–3:45pm Children’s Museum Indianapolis Preschool Hallway 3000 North Meridian St. Indianapolis, IN 46208 Space is limited to 10 people. Seats reserved at the concierge desk https://www.childrensmuseum.org/visit/calendar/view/843/2021-02-27 Autism Parents’ Support Group of Indiana (Facebook) FREE Virtual Weekly Meetings (Google Meet) Saturdays 11am–12pm (last Saturday of the month–Fun and Games 11am–12pm) https://www.facebook.com/groups/ autismparentssupportgroupofindiana/ Sensory Friendly Hours First Sunday of Every Month 10–12pm Conner Prairie 13400 Allisonville Rd. Fishers, IN 46038 https://www.connerprairie.org/explore/things-to-do/ sensory-friendly-hours/ 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.

February 2021 • Special Needs Living

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siblings perspective By: Erin Baoz

Meet Tyler Ashby & His Brother, Caleb

Tyler Ashby, 16, is excited at this opportunity to share what it’s like to have a sibling with special needs. Tyler is a sophomore at Noblesville High School.

His brother, Caleb, is 12 years old and attends Noblesville West Middle School.

Caleb was born with a genetic disorder, Down Syndrome, which is caused by abnormal cell division that results in an extra full or partial copy of chromosome 21. The extra material is what brings about the developmental and physical features of Down Syndrome.

Tyler shares that being a sibling to a person with special needs has made him more kind to others regardless of who they are. Every day Tyler sees people

22 Special Needs Living • February 2021

who decide to disrespect other people for the simple reason that they are different than them. When he witnesses how it affects the families and people with disabilities, it has taught him the importance of kindness.

As Tyler reflects on how Caleb has motivated him, he can honestly say that he is inspired to try and make the world a better place. If it weren’t for Caleb, I wouldn’t see the injustice in the world

In addition, Tyler was pleasantly surprised to see how well the Disney characters treated Caleb when he was shy.

One hobby that Caleb enjoys is listening to music and singing it at the top of his lungs. Every time we are in the car he gives us our own little concert. Caleb and Tyler really enjoy wrestling with each other.

At least once a day it seems like one of us is provoking the other in order to start a wrestling match, and most of the time it works.

A piece of advice that Tyler would like to offer for anyone that has a sibling with special needs is, when you see injustice, whether that be someone saying the r-word, making fun of someone with a disability or noticing someone with special needs is being excluded, do not respond with hate. Instead, respectfully tell them how their words or actions can be hurtful. People are more likely to respect your concern if you come from a place of love, not hate. Â around him. It really upsets me that in 2020 we are dealing with the issue of equality. So Tyler wakes up every day with the intention of doing everything possible to try and make the world a better place for his brother and others with disabilities.

One of Tyler’s all-time favorite memories with Caleb is the first time they went to Disney World. The entire day the family was on an adventure of rides, meeting characters, and eating food. At first, Caleb was a little shy, hiding behind our dad and not wanting to greet or meet any of the characters, but over time he eventually opened up, started to talk to them and enjoyed himself.

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.

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Tyler shares that one big challenge with having a sibling with special needs is observing how people living their normal dayto-day lives do not appear to care or give much attention to those with obstacles. One way that Tyler has overcome this is by realizing that it is not that people don’t care ‌ it’s that they don’t know. Tyler takes it upon himself to best educate others on the issues that special needs kids face on a daily basis.

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.

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317-698-5264 | teamrichards25@yahoo.com February 2021 • Special Needs Living

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By Paul Hathcoat

PASTOR’S CORNER

Does your church have a special needs or disability ministry?

Is your church diverse or multicultural? Does the congregation you belong to support, celebrate, and include people of all colors, nationalities and abilities? Are churches in the U.S. getting more diverse and inclusive or less? These questions and more are important to ask and answer as the church continues to try to become more effectively relevant and integrated into the culture and communities around it.

There is no doubt and statistics show that the American church is shrinking. Is the church failing somehow and what can we do about it? In my opinion, the special needs community being absent from many churches is one of the reasons why they have not fully thrived and grown. How can we help?

We already know that God has built all humans to work together in unity to make the healthiest of communities (1 Corinthians 1:10). I also know from experience that the members of many special needs communities are some of the most vibrant, inviting, forgiving, loving and REAL people in those churches, and their impact is indispensable and essential to its health. They are not typically the big tithers or the super communicators that many churches often covet in their congregants. Who they are though, are the same people that Jesus spent so much of His time with while He walked the earth. That example shows us the true

importance of doing life with all the people we share a zipcode with and even saving our time and attention for those who are different and seem to need more help. Why not place our neighbors with disabilities on stage, or on church boards and staffs?

Why not honor them with the same opportunities that typically developed people have? I continue to ask these questions.

In Central Indiana there are dozens of churches who have healthy and thriving disability ministries. These congregations are at the forefront of the inclusion wave within the faith community and their ability to recognize the importance of setting a plate at the table for everyone, brings blessing and true joy to their people.

They have recognized, through inclusion and diversity, that by treating everyone as a son and daughter of God, and by not categorizing and stereotypically labeling them, that their community comes alive and starts to become a truer version of God’s ultimate plan for His people. That inherent love and acceptance in those congregations are what all churches should be striving for.

And, let me say to you the reader, it is attainable in every church with your and my help and influence.

What if my church doesn’t have a disability ministry? Well, if you remember from last month’s article, it only takes one passionate person to help get that type of ministry started. Is that you?

How do we get the youth, adults and families living with special needs in our community to even come to our church? Will they even show up? If you host it, they will come!

Host a respite night. Host a parent support group. Host a holiday dance or an outdoor movie night and take to social media to get the word out. I have found here in Noblesville, that there are still hundreds of families in my own area who still don’t know about the solid Christ-centered special needs ministries around them.

In the areas of the state that don’t yet have churches who offer these types of supports – THE PEOPLE ARE WAITING. Whether you get one or 50 people to show up to your first event, it is worth it! Keep at it, go find the people and pray and ask God to bless your humble efforts. God wants to be able to have His glory shine through you and those whom He has created with disabilities. He tells us that “my power is made perfect in weakness” (2 Cor. 12:9). Lord bless our efforts and our lives. We trust in you!

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.

24 Special Needs Living • February 2021

non-profit spotlight

mom as I spend weeks at a time at the hospital with Hannah. The monthly adventures mean something positive for them to look forward to as well. We get to attend events that we otherwise would not have the means or opportunity to experience apart from A Kid Again. – AKA mom of Hannah

By Katie Pappas

A Kid Again allowed our family to form great friendships with other A Kid Again families, and the opportunity to have fun-filled days, even when financially we weren’t able to do these things on our own. – AKA Mom of Carter A Kid Again is like a life-line. Something we can point to each month and look forward to as a family.

We make sure to put those events in big red letters on the calendar and it seems to make the yucky medical stuff pale in comparison. — AKA Mom Cheryl Katie Pappas 8275 Allison Pointe Trl., Suite 220 Indianapolis, IN 46250 317-295-3178 | kpappas@akidagain.org

Being a kid means waking up to endless possibilities and the anticipation of all the adventures that await outside your door. But when a child gets sick, childhood itself just stops.

This is the very reason A Kid Again was created!

Tell us more about your organization:

A Kid Again provides consistent, cost-free, year-round adventures for children with life-threatening conditions and their families, to remember what it was to live care-free. We also provide family support, peer-to-peer connections, and other resources to help families cope with the extended effects of life-threatening conditions.

How does your organization support those in the special needs community?

We provide year-round fun-filled adventures that allow children with life-threatening conditions to feel like A Kid Again. A Kid Again works to create a communal and interactive environment. Our program establishes ongoing, nurturing experiences that complement but do not

overtake their day-today living.

How can others get involved or support your organization?

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.

As a donor, sponsor, or volunteer you are an important part of the A Kid Again family. We encourage you to not only support our mission financially but also join us for adventures and other events to fully understand the impact of your generosity and meet the families you are supporting. Seeing the smiles and laughs of the children will have you asking, “why didn’t I get involved sooner?”

What difficulties and/or challenges do you help families and/or individuals with special needs overcome?

We provide family support, peer-topeer connections, and other resources to help families cope with the extended effects of life-threatening conditions.

Testimonials

As much as A Kid Again has been a blessing to Hannah, it has also been a blessing to her brothers. Being a sibling of a special needs child is difficult.

Her brothers get dragged to appointments and therapies. They miss their February 2021 • Special Needs Living

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A Mother’s

Promise “Be careful what you ask for.” I have heard that a million times in my life. I knew what was meant by it, but I am not sure if I ever really thought much about it until the “ask”

By DeAndra Yates came to pass. We ask but do not really prepare for what the answer is. I think we have an idea but can so easily be caught off guard with the outcome.

In December of 2013, I stood at my kitchen sink and asked God “what is my purpose?” I was a 30-year-old divorcee with a decent job and two wonderful young men that called me mom. Life was good, but I have to admit, I was yearning for more, a clear definition of me being fearfully and wonderfully made, made to do what I often thought about.

On January 1, 2014, I hosted a New Year’s Day brunch with some of my closest relatives and I presented a toast, thanking God for not allowing the rising gun violence in our city to come near our family. Celebrating the fact that my boys had good male role models and that with our family values and upbringing, there was no real fear that such tragedies would come our way. As a family we toasted, ate, and enjoyed our blessings.

One shot changed our lives forever! That toast, that gratitude, and that yearning for purpose all came to a head when a stray bullet shattered a window at a home where my eldest son, DeAndre, was dancing with friends at a birthday party. I am almost positive that he had his eye on some pretty girl when a bullet pierced the back of his head, not only shattering his skull but our lives. To receive that type of phone call is a parent’s worse nightmare – your child not coming home or not coming back to you the way you saw them. Tragedy had struck.

My son was pronounced dead. I was asked to come and identify his body. I collapsed. I cried out, asking God, “How did we get to this place?” He whispered, “Remember, you asked for purpose.”

In my heart, I wished with everything within that I could have taken that conversation back. I did not want anything to do with this type of pain, no matter the purpose.

As days went by, my son regained life – barely, but he was still here. He had been resuscitated and rushed into surgery. Over the next 37 days his life, my life, and my younger son’s life seemed to be touch and go.

26 Special Needs Living • February 2021

DeAndre survived! My once tall, dark, athletic, and handsome son lay almost lifeless in a hospital bed. As a mother, all I could think was that his hopes and dreams had been snatched from him.

In the six and half years following my son’s shooting, life has taken an incredible turn. God truly revealed the purpose for my pain. I asked for it. Walking in purpose has come with some challenges, major ones. My youngest was diagnosed with autism three years later, and major depressive disorder six years later.

I had to become a champion and advocate for both boys, being their biggest cheerleaders on the good and bad days. Consoling them and loving them despite documented and evident deficits.

We have found resilience! Dre has defied all odds. I promised him when he was on life support if he would fight to live, I would be his voice, arms, and legs. I told Darrius, my youngest, that he will never have to walk his journey alone. What has not killed me and my boys has made us stronger. We do not get to travel together like we used to, we cannot crawl in the bed and watch movies together and laugh and eat ice cream with Dre, but the one thing we still have is one another. We are adapting and navigating our new journey, one day at a time.

We have a bond of faith and love that is unbreakable. We have a testimony to share with others, one that exemplifies the definition of family determination to never give up. Yes, it can be very difficult on the days that Dre is in the hospital or Darrius is

overcome with sadness. We press pause, we pray, and we have our moment of not being ok. You have to accept those days as they come, they are part of the forever journey of healing.

I was so blessed to have gotten remarried four years after my son was shot and wounded. Some may think, “Why is this a big deal?” To me, it means everything to have been found by a man who was not afraid of the challenges my family package brought to the table. Each and every time my Dre hears my husband’s voice or sees his face, he begins dancing in his wheelchair.

Their connection is purposeful.

I have advocated from the White House to the Indiana State House. This year I was chosen as the Gun Violence Speaker for the Democratic National Convention. I have been in publications from People to Time Magazine, and am so blessed and honored to have had these opportunities to share my story. However, what matters most is upholding that promise I made to Dre when I did not know if he would make it through the night; the same one I had to reaffirm to Darrius when he felt like his life was not worth living without his big brother. A mother’s promise means everything to me.

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.

February 2021 • Special Needs Living

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art

by Olivia

A Unique Kind of Art

Brian, Laura, Noah, Olivia Graham

28 Special Needs Living • February 2021

By Hope Johnson

Only a few individuals are fortunate enough to realize and have the ability to explore their gifts and talents as young people. One teenager is not only doing what she loves, but she is turning her passion into a profession and overcoming her disability in the process.

Olivia Graham is a fun-loving, kind, and enthusiastic 17-year-old who loves creating art with her teacher, Kate Wagner, according to her Facebook page. She started working with Kate about three years ago. Olivia was born with Down syndrome.

Art has become an outlet for Olivia and a way to express herself, according to her mother, Laura Graham. Olivia has held local art exhibits and sells her artwork. She also creates note cards from her art.

“When I heard about art therapy and talked with Kate Wagner, who has been her art therapist for three years now, I just thought it would be a fun thing for Olivia to try,” said Laura. “It has been a match made in heaven.”

She continues, “Kate is able to really bring out Olivia’s creativity, and Olivia enjoys making things of her own. It is empowering for her to see what she has been able to create.”

When Olivia started art therapy, Laura would never have imagined that it would eventually become a profitable business for her daughter. “It has been a very positive and confidence-building experience for her,” she said.

Olivia’s business, Art by Olivia, has also allowed her to be independent, develop her job skills, and have a sense of purpose.

There is opportunity out there for everyone with support and perseverance, her mom says.

Olivia and her family have lived in Westfield for 19 years. Their furry family member is a dog named Teddy. Westfield is an area with great schools and opportunities for lots to do as a family. She has gone through Westfield Washington Schools from preschool through high school and is now a junior. She has

QUICK NOTE FROM THE WRITER: HOPE JOHNSON As a person living with a disability, I understand that the importance of finding a sense of purpose in the world is a vital ingredient to life itself. Overcoming odds is the key to success, and gives a person the ability to thrive on their own terms and set and achieve self-imposed goals.

From my personal experience, if someone finds something that they truly care about, they will find a way to fulfill their dreams — no matter what their limitations. “Where there’s a will, there’s a way,” they say, and I have found this to be the case in almost every situation I have encountered.

an adapted curriculum and works best with 1:1 or small group instruction. Her older brother, Noah, is a freshman at Purdue.

She loves video chatting with him and is always excited when he comes home.

Olivia loves any chance to perform and show off her skills. She loves to be involved in all kinds of activities, including dance, cheer, theater, choir, and art.

Olivia enjoys being with friends, watching movies, and eating Mexican food every chance she gets. Her goals are to work in a hospital with children creating art, to live independently with friends, and to travel.

“Art has provided Olivia an opportunity to share her talent with others,” says her mom. “She has participated in art shows and shared her story with many others in the community. It has been a great outlet and a way for Olivia to get involved in new things in the community.”

So far, she has displayed her artwork locally at Four Day Ray Brewery, Conner Prairie, and No Label at the Table.

Laura says that Olivia enjoys painting her creations. “It gives her a sense of accomplishment to see what she has made,” she relates. “(T)hen being able to share it with others makes her very happy. She loves talking with people about her artwork and seeing the joy it brings.”

Olivia’s inspiration for her paintings often come from a team effort between her, Laura, and Olivia’s therapist. “We work together and brainstorm ideas,” Laura explains.

Olivia’s story proves that anything is possible, and dreams can come true with the support of others. Most importantly, though, it shows that believing in yourself and overcoming difficulties are keys to success in all endeavors, no matter how large or small.

Do you have a gift/talent or run a business as someone with special needs and would like to share your story in an upcoming issue of Special Needs Living? Email us at SpecialNeedsLivingIndy@n2pub.com.

As a writer, I know feelings of joy and accomplishment when I first read a newly-published piece that I have written. I can only imagine that Olivia feels the same exhilaration when she finishes a painting or sells a piece of artwork.

The ability to create, and to have individuals like and purchase your work, is one of the most rewarding aspects of life, I feel.

Olivia discovered this when she began to paint.

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29

caregivers & healthcare corner

By Lisa M. Monge, MSN, RN

Be Your Own Valentine

Sweetheart: Selfcare and Caregiver Burnout

February is most famous for Valentine’s Day. History and tradition herald this day as a time to give candy, flowers, gifts, and favors to our loved ones. Across the globe, many will honor their spouses, partners, sweethearts, and children. While it is exciting to give to others during this and many other holidays, it is important to remember to give back to ourselves. Selfcare, or a cognizant effort to prioritize our own physical, emotional and mental health, is vital to living an optimal life.

A caregiver can be anyone who renders a service or task for any child, adult, or family. This person can be a family member, a professional providing medical or non-medical care, a community member, or a volunteer. While caregiving is a very rewarding job, it is also very complicated and can sometimes entail long days, endless nights, extreme stress, and caregiver burnout.

Caregivers will often neglect their own well-being.

In fact, 72% of family caregivers have not gone to the doctor as often as they should and report skipping 55% of doctor appointments. Another study concluded up to 70% of caregivers have signs of depression and extreme stress, causing premature aging.

“It takes a village” The first step in self-care as a special needs caregiver is accepting limits to what you can do.

Superman and Wonder Woman are fictional! Try to maintain a healthy sleep schedule, stay hydrated, exercise regularly, and take a break from your responsibilities! If you are the primary caregiver, find a caregiver for yourself! Try to find someone you trust to give you a break (a neighbor, respite

30 Special Needs Living • February 2021

worker, family or friend, etc.). There are endless resources, but you may have to ask. Just like it is important to have boundaries with others, it is also important to set boundaries with ourselves.

we must be healthy individuals first.

Caregiving, even under the best of circumstances, can be draining.

Taking care of ourselves first will allow us to optimize the care we provide for others.

“Kick up your heels” Isolation and alienation are common when living with a child or family member with difficult or challenging behaviors. Feeling limited or secluded in any way can contribute to stress and take an emotional toll. Respite care can give you temporary relief during this time. If you have no resources, ask! Taking care of your emotional and social health is just as important as physical care and routine. Of course, talking to a medical professional is always a good idea. However, something as simple as making time for an adult-only social life can be a breath of fresh air. To retrieve some of your emotional health, start asking yourself questions like:

If you are a caregiver and are struggling in any way, I encourage you to reach out. If there is any question or resource that may be beneficial to enhance your self-care, please reach out. If you are feeling like harming yourself or anyone else, please seek immediate medical attention.

·

·

·

Stay healthy, Nurse Lisa

When was the last time I had a date night?

When was the last time I went dancing?

When was the last time I laughed with my best friend?

Self-care is vital to preventing caregiver burnout. In order to be the best provider, parent, employee, friend, neighbor, or anything else,

If you have a story you would like to share to impact other caregivers in the special needs community, I am available at Specialneedslivingnurse@ gmail.com or you can submit a caregiver’s story on the form below. https://form.jotform. com/202605155839154

References Caregiver Action Network (2019, October 30). 10 tips for family caregivers. https://caregiveraction.org/ resources/10-tips-family-caregivers Child Mind Institute (2020, May 28).

Why Self-Care Is Essential to Parenting. childmind.org. https://childmind.org/article/ fighting-caregiver-burnout-special-needs-kids/

February 2021 • Special Needs Living

31

By Brittany Lowe

About It is no secret that there are difficulties with finding social environments for individuals with different abilities. Often families witness their children and/or loved one’s experience isolation and loneliness.

Individuals with different abilities also desire a way to socialize and build relationships. Their desires are now becoming a reality!

The Indianapolis Flames Alternative Baseball Organization (ABO), Inc. is a non-profit organization based in Indianapolis, IN. The organization covers Central Indiana. We provide a positive, judgement free, social, and supportive environment for Autistic individuals and others with different abilities (ages 15 and up) through the game of baseball. The organization creates an environment where social skills and relationships can be built and maintained through the competitive game of baseball (played according to MLB rules). The Indianapolis Flames ABO will be split into two teams, Indianapolis Flames North and South for the first year. Depending on the number of players, the team would be split into four to represent different sides of town within Central Indiana, North, South, East, and West as soon as the second year.

The Alternative Baseball Organization originally started in Georgia

by Taylor Duncan. Taylor Duncan is an Autistic adult, baseball player, CEO and Founder, and speaker who loves baseball and decided to start the organization to bring the game of baseball to individuals with different abilities. It will provide a social and competitive environment. The organization plays according to MLB rules.

He had a mission to expand the Alternative Baseball Organization into different states across the country.

The Alternative Baseball Organizations slogan is powering through perceptions. There is this overwhelming focus that individuals with different abilities can’t do this and that, when in fact there is so much that they can do. There are talents and gifts that need support as well. It is through our focus on relationships and showing everyone what individuals with different abilities can do, our local organization slogan was developed for the Indianapolis Flames ABO, “Relationships and Talent Burning Bright Through Baseball.”

Expansion to Central Indiana He reached out to my husband and I, parents of an autistic child, who also have an online statewide Facebook support group (Autism Parents’ Support Group of Indiana) where parents/guardians and autistic individuals have come together in providing support through knowledge obtained from personal experiences. The information

32 Special Needs Living • February 2021

for the team came through the group security questions. Once this request was read there was no doubt that this was something that we felt called to do. While our child is not old enough to play, we feel that this is something that is crucial to bring and maintain for years to come in Central Indiana for individuals with different abilities.

Once I saw the request, I knew this was something that my husband, David Lowe would love to do. We became the General Managers and Founders of the Indianapolis Flames ABO. My husband is also the Team Manager/Head Coach of the Indianapolis Flames ABO North team, which brings focus to the on-field success. I feel this is a perfect fit because he is the brains behind baseball. I choose to focus on the things outside of the field while assisting with on-field as needed.

About the Team Manager/Head Coach David Lowe’s love for baseball started at the age of 4, when he played t-ball. At the age of 5, he played for a team called the Warriors that was coached by his dad. His dad also worked with him outside of practice and games to help David achieve his goals. David Lowe’s mother supported him as well and obtained a pitching coach for him as this was something he loved to do. He played baseball until near the end of his high school career. Today, my husband and autistic son play baseball together. They both love and enjoy playing baseball. We have seen growth in our son playing and enjoying baseball. While this is only one area that we see our son has interest in, we will support and contribute to his goals and growth in whatever he wants to do. As he gets older, we will make sure he has a place where his talents can shine bright, to socialize, and build relationships.

We are not just trying to develop and maintain a place for our son, but for many others with different abilities as well. There are individuals receiving diagnoses every day. The hope is that the Indianapolis Flames ABO will be maintained so that everyone can play baseball and be a part of an organization that provides a social and supportive environment.

Safety With COVID-19 there are changes and precautions added to our safety procedure development that will be communicated as they are finalized and follow standards. Safety is a priority for our organization and the pandemic is something that is monitored closely. We understand that there is a possibility the season may not start in mid-March of this year as planned but are remaining optimistic and planning as if it will.

Interested?

The Indianapolis Flames ABO is currently looking for players and volunteers. The cost for players is $10 the first year and $25 each year after that. Players must be individuals with different abilities (autistic and special needs and have received a diagnosis). There are no additional costs for the players. Volunteers do NOT have to be individuals with different abilities. Anyone can volunteer. Each volunteer that will be in contact with players has to complete and pass a background check. The fee for completing the background check is $19 each year.

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More information about the Indianapolis Flames ABO can be obtained by contacting indianapolisflamesabo@gmail.com.

We are on Facebook and Instagram as well. The contact number (call/text/voicemail) is 317-893-7385.

Dedication We would like to close this article with a dedication to David Lowe’s mother, Dianna Peterson-Lowe. She was a loving mother and wife who will forever be missed. David’s parents always supported him and prepared him to be the best brother, husband, father, son, uncle and now coach that he could be. R.I.H. Dianna Peterson-Lowe.

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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33

pioneer parents in indiana

Meet Beth DeHoff

By Angela Arlington

Beth DeHoff’s youngest son Kyle was born in 1999. He had a prenatal diagnosis of Down syndrome. Having two older sons with no health issues, Beth soon found out there were not a lot of disability services on the west side of Indianapolis. When Kyle was 3 years old, he was diagnosed with leukemia.

“We were thrust into the disability world without much background in it,” Beth recalled. “We learned what we needed for Kyle in kind of a patchwork way, with medical professionals providing some of the information and other parents we met providing much of the rest.”

Beth’s family was active at Speedway United Methodist Church (SUMC). She became aware that most people with disabilities and their families did not attend church and often did not feel welcome in church. Beth wanted to change that. Her vision was to make the church a place where families could gain information about programs, talk to each other, and find support. “I had the idea, read the book, Unexpected Guests at God’s Banquet by Brett Webb in a week or so, and talked to some church members I thought might be interested,” Beth recalled. “I talked to our pastor, who has a son with autism. So many of them were willing to help, it seemed like it was meant to be, so we got started.

Within about three months we had a mission statement and a committee and started planning a special needs fair.”

Beth started Speedway’s Special Needs Ministry in 2005 and it was an instant success. It brought information and services to people with disabilities and their families on the west side of Indianapolis and Hendricks County. It expanded actual services, provided information to families to help them access other services, and offered families a way to find support and information from each other.

34 Special Needs Living • February 2021

For those interested, it also provided a welcoming church home with supportive services available.

Since the organization was a church ministry, some of the funding came from the church budget.

In 2006, Beth organized Speedway’s first Special Needs Fair with 30 disability organizations. It became a larger annual resource fair with eventually 60 disability organizations, providing information on services and supports for people with disabilities and their families.

“As the special needs fair expanded, we started charging booth fees to for-profit and large nonprofit organizations,” Beth said. “We also offered food for lunch and accepted donations for that. Eventually, the proceeds from the special needs fair provided our entire budget, and we even supported some other ministries ourselves.” Her goal to help other families was beginning. “Parent-to-parent support is invaluable for parents of kids with disabilities,” Beth explained. “When you’re overwhelmed or looking for answers, use those families to find your own support. Parent to parent support is super effective and backed by research.”

“We had speakers come and speak more in-depth about topics several times a year. We had a youth group for youth and young adults with disabilities who spent part of their time with the main youth group and part of the time with each other. We housed social skills groups. Our work led to the location of an ABA clinic on the west side. It also led to a local disability organization sponsoring a summer day camp at our church for several years.

The group’s work was recognized by local disability organizations as well as the Indianapolis City Council.” Unfortunately, the organization discontinued after Beth’s family moved out of the area in 2014. “The ministry I started did not continue, but it’s not nearly as needed today as it was then.

However, I’ve started a different kind of disability ministry in my new church, and it will always be something I’ll be involved in.”

Creating the Special Needs ministry at SUMC changed Beth’s path. She had been working in the marketing world when Kyle was born. “It literally called me into my life’s work. I loved helping other families of kids with disabilities, and I prayed for some way to make that kind of work my job.

This work allowed me to get a fellowship at Riley Child Development Center and then a full-time job supporting NICU families and getting them signed up for programs to help them. I continue in this work, which also led me to get my master’s degree

in public health. It also opened a door for advocacy, and I’ve been an active disability advocate ever since.

I’ve advocated for and against state and national legislation that affects people with disabilities and their families, and I help other people with disabilities and families make their voices heard.”

Today, Beth works as the financial resource coordinator for the NICU Family Support Program, also known as the “NICU Nest” at Riley Hospital. She also serves on the Governor’s Council for People with Disabilities and on the policy committee of Down Syndrome Indiana. “I have led and participated in disability committees for the state and national United Methodist Church. I often speak on disability issues and on disability ministry, and I’ve trained other churches in disability ministry as well. All of this started with my son, and became possible through my work in the ministry.”

Beth has learned a lot from her own experiences with her son and her work with other families. She firmly believes that the church should welcome all who come. “If you want to find a church home, try some out, find a church that welcomes you, and make your place in it,” she says. She encourages others to use their own experiences to help others.

“When you’ve emerged from the fog of parenting a

child with disabilities, no matter how long it takes, look for ways to help other families, even in small ways. You have life experience and expertise. Share it. It can literally change your life for the better.”

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.

February 2021 • Special Needs Living

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LOVE NEVER FAILS a moment of inspiration – by a special needs mom

By Maureen Marsh

developed a chronic cough. After an especially disruptive night when a coughing fit kept us all awake, I barked at him to see a doctor.

“Love is patient, Love is kind…”

Cancer.

So began the reading from Corinthians recited at our wedding 17 years ago. We stood at the front of that old Gothic church, giddy and nervous, facing each other and holding hands while the 150 witnesses faded into the background. We pledged our love to each other; we made vows that we had absolutely no way of fully understanding at the time.

We celebrated our anniversary this year in a lockdown. We ordered carry-out and sat on the screened-in porch while our son played in the backyard. This was our first pandemic, but not the first anniversary spent with our child. Our support and sitters have dwindled. We are almost never alone. This is our normal.

“Love does not envy, it does not boast, it is not proud…”

The early years were quieter – we navigated through the usual problems. Why won’t he communicate more? Why won’t she stop complaining? There was a big fight over a Christmas tree of all things. At some point, my longing for a child grew stronger, and we decided to go for it. There were visits to a fertility specialist, and procedures, and teary nights grieving something that I didn’t even have to lose in the first place. I just wanted what it seemed like everyone else had so easily – I left Target in a confusing rage once after seeing three different pregnant strangers happily shopping. At some point, to save my sanity and possibly my marriage, I gave up on the notion of a baby, or at least I surrendered to the idea that I wasn’t in control of the process. And then it happened.

“Love does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs…”

We were overjoyed to welcome our son after a normal pregnancy and birth and had no idea that part of his cerebellum had failed to form in utero. We would learn this together nine months later, crammed into a neurosurgeon’s tiny office at Riley Hospital. I searched my husband’s face for some kind of reassurance or evidence to the contrary and found none. We took our baby home and began our initiation into a club we didn’t ask to join – the Special Needs Parents club. Our son was slow to meet all the milestones, and we weathered the questions and stares together. The temptation to lash out at each other under the pressure was great. The temptation to hold onto each other like a tree in a hurricane was greater.

The preschool years were particularly challenging for me, personally, and I felt myself spiraling. I began to resent little things, like my husband being able to shower alone, eat lunch at work uninterrupted, and even talk to other adults. It was around this time he

36 Special Needs Living • February 2021

“Love does not delight in evil, but rejoices with the truth…”

The thyroid had become a giant mass that bulged and pushed toward the back of his throat and down into his chest, making his airway as thin as a straw (as evidenced by the scan the surgeon was holding up). There were surgery complications, and recovering at home one night he held his chest and mouthed the words “call 911.” As they loaded him into the ambulance, my mind went wild with what to do about my son and how to help my husband. My heart was being torn in two directions. My husband had developed blood clots and spent days in the ICU for pulmonary emboli. For the first time, I had to really consider what would happen if I lost him, and planning how I would care for our son alone. I was terrified.

Time passed and there were follow-up treatments and he was feeling healthy and well. He had accepted a promotion at work and we were in a new house. My son started first grade and a few weeks after school started, he got the usual sniffles and cough from new-schoolyear germs. But the coughing got worse. And worse. It felt like a bad dream driving to the ER again in the middle of the night, this time for my baby. He had severe aspiration pneumonia and needed emergency surgery to clear his lungs. We faced each other and held hands as the surgeon asked for consent forms and explained possible complications and wheeled our baby boy away, not knowing if we would ever see him alive again. He recovered fully.

I don’t know if there is a secret to a long and happy marriage.

Parents of special needs children have unique challenges, and just like everything else, it seems the usual advice and rules don’t always apply. We may never be empty nesters, for example. But I know how I felt when the very real possibility of losing my partner surfaced, and I know how I feel when I watch him with our son. My life doesn’t really look anything like I thought it would 17 years ago when I stepped into that strapless wedding gown, and our first dance has morphed into wrestling with clothes and orthotic braces and handing off tube feeds like some weird waltz that we dance over and over. I have no idea what the future holds, but for now, I can without hesitation proclaim that I would say “I do” all over again.

“Love always protects, always trusts, always hopes, always perseveres. Love never fails.”

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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38 Special Needs Living • February 2021

February 2021 • Special Needs Living

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