living
Special Needs
November 2020
Indianapolis & Surrounding Areas
MEET THE
CASH FAMILY Photos by: Leah Parks - Nightingale + Willow
Inside: Family Voices Young Achiever - Brenna French Meet the Gregg Family A Moment of Inspiration Meet ICAN Service Dog Paco The ABC’S of IEP’S Meet Makenzie Blake Local Events & More
CONNECTING - INSPIRING - EDUCATING - FAMILIES WITH SPECIAL NEEDS
2 Special Needs Living • November 2020
I M P O RTA N T
NUMBERS 911 317-977-2375
Emergency
www.n2pub.com Turning Neighborhoods Into Communities © 2020 Neighborhood Networks Publishing, Inc.
AREA DIRECTOR PUBLISHER
Jamie McCabe jamie.mccabe@n2pub.com
Arc of Indiana www.arcind.org
317-257-8683 800-609-8448
ASK: About Special Kids, Inc. www.aboutspecialkids.org
877-241-8144
Autism Society of Indiana
317-232-7770
with Disabilities (GPCPD)
812-855-6508
Indiana Resource Center for Autism
317-233-1325
Indiana State Department of Health
844-446-7452
Indiana Statewide Independent Living Council (INSILC)
800-545-7763
Blind and Visually Impaired Services (BVIS)
800-545-7763
Bureau of Developmental Disabilities Services (BDDS)
855-641-8382
Bureau of Rehabilitation Services (BRS)
800-332-4433 800-457-4584
INSOURCE http://insource.org/
800-403-0864
Deaf and Hard of Hearing Services (DHHS) DHHSHelp@fssa/in.gov
317-232-7770
Medicaid Disability
317-232-7800
Disability Determination Bureau 800-772-1213
Medicaid Waivers
800-622-4968
Indiana Works
888-673-0002
317-925-7617
Division of Aging (IDA)
877-511-1144
Division of Family Resources (DFR)
1-800-772-1213
317-466-1000
Division of Mental Health and Addiction
844-323-4636
Down Syndrome Indiana
800-545-7763
Early Childhood and Out of School Learning (OECOSL)
574-234-7101
Social Security Administration (SSA)
877-851-4106
Social Security Disability Insurance (SSDI)
317-871-4032
Special Education Questions
800-545-7763
United Cerebral Palsy Association of Grater Indiana Vocational Rehabilitation Services (VR)
Easterseals Crossroads 317-232-0570 317-233-4454
Family Voices Indiana www.fvindiana.org First Steps IN*SOURCE www.insource.org Indiana Department of Education: Office of Special Education www.doe.in.gov/specialed Indiana Family and Social Services Administration (FSSA) www.in.gov/fssa/index.htm Indiana Governor’s Council for People
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 N2 Publishing or the publisher. Therefore, neither N2 Publishing nor the publisher may be held liable or responsible for business practices of these companies. NOTE: When community events take place, photographers may be present to take photos for that event and they may be used in this publication.
November 2020 • Special Needs Living
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Sponsor I N D E X Neighborhood
Thank you to all the below supporters who have chosen to support Special Needs Living Magazine, because of their support we are able to mail this to you free of charge each month!! They are delighted to help you with any of your needs. Please let us know if there is a company or organization that supports the Special Needs Community that you would like to recommend - Jamie.McCabe@n2pub.com ABA & COMPREHENSIVE SERVICES K1ds Count Therapy (317) 520-4748 ABA SERVICES Autism Center for Enrichment (317) 436-7080 Mindful and Modern ABA Therapies (317) 827-7777 The Indiana Institute for Behavior Analysis, LLC (317) 388-8131 ACCESSIBILITY PRODUCTS AMRamp (260) 519-0101 ASSISTANCE DOG Indiana Canine Assistant Network, INC. (ICAN) (317) 250-6450 ATTORNEY-WILLS/TRUSTS/ ESTATE PLANNING Law Office of Elizabeth A. Homes LLC (317) 660-5004 DENTAL CARE Children’s Dental Center (317) 842-8453
4 Special Needs Living • November 2020
FINANCIAL WestPoint Financial Group Gordon Homes (317) 567-2005 FUNCTIONAL MEDICINE Wholestic Nutrition (812) 320-9954 HEALTH & WELLNESS LifeVantage - Team Richards Kristin Richards (317) 698-5264
NEUROFEEDBACK THERAPY Indy Neurofeedback (317) 888-8500 PEDIATRIC THERAPY Wee Speak (765) 446-8300 REGENERATIVE MEDICINE/STEM CELL THERAPY Destination ReGen (317) 522-1980
Ritello Clifton Herbert (661) 317-6157
SPECIAL EDUCATION CONSULTING IEP Services, LLC. Sheila Wolfe (317) 573-9610
HEALTH / GYMNASTICS Body by GymRoots Studio (317) 579-9300
SUPPORT SERVICES Easterseals Crossroads (317) 466-1000
INSURANCE: AUTO/HOME/LIFE State Farm Josh Fields (317) 875-0013 MOBILITY / ACCESSIBILITY CYA Mobility (317) 530-2541
MEET THE
Special Needs Living
TEAM
JAMIE MCCABE Publisher & Area Director
BRITTANY LOWE Event Executive
HEATHER GREGG Photographer 21 Vines Photography
LEAH PARKS Knightingale + Willow Photography
MARIA SMIETANA Editor & Writer
WRITER & CONTRIBUTORS
CARLA MILLER
DEANDRA YATES
ERIN BOAZ
PAUL HATHCOAT
ANGELA ARLINGTON
SHANNAN PENAFLOR
MAUREEN MARSH
LISA MONGE
SHEILA WOLFE
LAURA SPIEGEL
November 2020 • Special Needs Living
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6 Special Needs Living • November 2020
Left: Justin, Jamie, Jaylin, Jordan, Jade Right: Jamie & Jordan
you, your family and your special needs child. To the events we will host throughout the year that will connect families with each other If you would like to be added to our event list please email us at SpecialNeedsLivingIndy@ n2pub.com.
publisher’s note YEPPIE!!! Special Needs Living Magazine is finally here!!!
About three years ago, when my 8-year-old, non-verbal, and epileptic son Jordan was 5, he had just been diagnosed with autism. I was feeling isolated and alone. I remember feeling that what we thought life would be like raising a child was turning out to be a much different experience. That hope for hearing our child say ‘I love you’ and being able to tell us how his day was, or what his likes or dislikes were, did not exist anymore. It was almost like we had to grieve the loss and accept what a blessing we had and look at him in a whole new light. We do not have any local family and I did not know of any other parents who had kids with special needs. I remember thinking, I can’t be the only one in the state or nation that feels this way. I knew I had to turn my pain into purpose and find a way to create a community, one where everyone can be accepted and loved and be able to share their story, get advice, and find resources. I envisioned a community where we could inspire each other to find our own path, and to connect with those who have had similar experiences while raising their special needs children. I already have the pleasure of publishing two local neighborhood magazines for 8 years that the community loved. My company, N2 Publishing, has neighborhood publications in thousands of communities throughout the nation, from private neighborhood magazines that go out to private neighborhoods like Bridgewater, The Village of WestClay, Traders Point, Cambridge, Britton Falls by Del Webb, Be Local magazine for new movers in Fishers & Centergrove, Real Producers for Top Real Estate Agents. I went to them convinced that we could use the same platform to develop a magazine to bring the special needs community together. My idea and vision was met with approval by N2, with much work and thanks to the supporters you see in this magazine that help to cover the monthly costs we are so excited to bring you the very first November edition of Special Needs Living. Just in the small amount of time I’ve been working on setting up this new publication, we have already learned about adaptive sports, and got our son enrolled into an adaptive Star soccer program. We also found out about Destination ReGen a now current supporter of Special Needs Living, we were able to get our son some stem cell therapy, we are seeing some tremendous improvements. I am excited about so many things with this monthly magazine. Ranging from the resources & Stories that will be shared here monthly and how they will impact & benefit
If you have not already 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 monthly. Special Needs Living is designed for 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. Often times we can feel alone and isolated in the world we live in today. The stories shared here will give hope, inspiration and encouragement, perhaps even shift your perspective. If you have a story you would like to share you are welcome to email us at SpecialNeedsLivingIndy@ n2pub.com or check out our Linktr.ee/ Community.Stories to view some of the story templet options. 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.To help get the word out to impact those in the special needs community, you can share the link found on our Special Needs Living Magazine Facebook page with any families or organizations that could benefit from Special Needs Living. We hope you enjoy your the first issue of Special Needs Living. We welcome feedback and are excited to bring this new magazine and resource to you! Your Publisher, Jamie McCabe 248-882-8448 Jamie.McCabe@n2pub.com November 2020 • Special Needs Living
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promotions
THIS MAGAZINE IS FOR YOU - BY YOU
TO SUPPORT & CONNECT YOU HERE IS HOW YOU CAN BE INVOLVED
HAVE A STORY TO SHARE
Would you like to share a story in an upcoming issue of Special Needs Living? We want to hear from you - To share a story or to nominate someone else to be in an upcoming issue of Special Needs Living? Email us your story ideas or nominations to SpecialNeedsLivingIndy@n2pub.com To view several story options with quick links to answer questions and upload photos go to Linktr.ee/Community.Stories
CALLING ALL 501C3 ORGANIZATIONS THAT SUPPORT THE SPECIAL NEEDS COMMUNITY
Each month we will highlight a nonprofit for free to let the community know more about how they support and impact families and individuals with special needs. Do you run a non profit or know of one that supports the special needs community? Email us at SpecialNeedsLivingIndy@n2pub.com
Accomplishments/ Achievements/ Milestones LOOKING TO CELEBRATE ALL SPECIAL NEEDS INDIVIDUALS
Some accomplishments & 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
LETS 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
These monthly magazines can be viewed for free online at our FACEBOOK PAGE - SPECIAL NEEDS LIVING MAGAZINE FOR ADVERTISING:
Would you like a printed and mailed copy monthly? - We can send these out to you monthly for $10 - You can email us at SpecialNeedsLivingIndy@n2pub.com REFERRAL PROGRAM
We have a referral program $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
8 Special Needs Living • November 2020
Do you run a business that supports the Special Needs Community and are looking to advertise and support the Special Needs Living Magazine email: Jamie.McCabe@n2pub.com Or use this link to schedule an time to talk and learn more https:// calendly.com/jamie-mccabe/special-needs-living-magazine
HIGHLIGHTING ALL SPECIAL NEEDS BUSINESSES
Do you have Special Needs and run a Business? We will highlight all those with special needs who run a business for Free - Email us or go to Linktr.ee/Community.Stories and click on (Special Needs Living - Business Profile Q&A)
You’re Invited to The Special Needs Living Launch Party Event brought to you by: Special Needs Living Magazine in partnership with Carter's Play Place
You’re invited to the Special Needs Living Launch Party Sunday, November 15, 2020 Two sessions pick one that works the best from: 1-2:30pm or 3-4:30pm Location: LEL Home Services: 5936 N Keystone Ave. Indianapolis, IN 46220
On behalf of Special Needs Living Magazine we’re inviting you to come out to the launch party. This is an event for Individuals with special needs, families with special needs kids & their siblings to play, connect with others, meet the supports of Special Needs Living Magazine, Fun & more!! There will be a DJ, balloon twister, activities & prize giveaways. You will also get the chance to meet other families and the supporters of Special Needs Living Magazine. Everything is free on behalf of our supporters!! Space is limited to reserve your spot register at Eventbrite Link to register for 1-2:30pm: specialneedslivingmagazinelaunchparty.eventbrite.com Link to register for 3-4:30pm https://www.eventbrite.com/e/124348897901
or email SpecialNeedsLivingIndy@n2pub.com Let us know how many are in your party and what time you would like to reserve for. Looking forward to seeing you there
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Josh Fields, State Farm® Insurance Agent 317-875-0013 insurewithjoshfields.com Our team has 21+ years combined experience! November 2020 • Special Needs Living
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MEET SERVICE DOG
PACO By: Lisa Condes | Photos by: © Liz Kaye Photography / ICANdog.org
MY SON YEAHSEN (PRONOUNCED YAYSUN, HIS NAME MEANS “THE ONE WHO KNOWS” IN THE NAVAJO LANGUAGE) HAS HAD A SERVICE DOG IN HIS LIFE SINCE 2014. YEAHSEN WAS BORN WITH A RARE CHROMOSOME DELETION AND IS PROFOUNDLY DEAF. HE IS ALSO ON THE AUTISM SPECTRUM AND IS FURTHER CHALLENGED BY BALANCE ISSUES AND INTELLECTUAL DELAYS. 10 Special Needs Living • November 2020
B
ack in 2012, we applied to the Indiana Canine Assistance Network (ICAN) for a service dog because Yeahsen’s behavior made it almost impossible for him to go out with us in public. Yeahsen was 10 years old and becoming more and more withdrawn and frustrated, not engaging or participating in life. We had to withdraw him from public school due to behavioral issues. After 2 years on a waiting list, Yeahsen was partnered with our first service dog, a golden retriever/Labrador mix named Harmony. She brought Yeahsen out of his shell, kept him safely with us (he was originally tethered to her harness) and eventually accompanied him back to public school. Unfortunately, in October 2019, Harmony was diagnosed with cancer and died 6 days later. She served Yeahsen until the end, including the night before she passed away. Harmony and Yeahsen were at the annual ICAN fundraiser that evening, attended by over 300 people and over 40 service dogs. Harmony met one dog, Paco, and the two of them seemed to really have a connection even though they had never met. We had no idea at the time that Paco would soon become our service dog, but Harmony knew. I believe she asked Paco to take care of her boy. In less than 5 minutes after meeting Paco, Harmony collapsed during the event. The following week, Paco, a yellow Labrador and Yeahsen met one another, and their journey began. Though Paco had some very big shoes (Jack’s) and paws (Harmony’s) to fill, the last few months have proven that he is prepared for the challenge. ICAN is committed to providing succession service dogs to clients whose dogs pass away, but there is not always an appropriate dog right away. We were so lucky that Paco was a perfect match (plus, he had made a commitment to Harmony). Yeahsen and I then spent a week in training with ICAN before we could bring Paco home. It was another week before Paco officially graduated as a service dog. Paco wears Harmony’s old vest so Yeahsen took to it right away as he was very comfortable with the handle and vest. Paco was already perfectly trained by ICAN, so the week we were in training, we humans were the ones learning the skills to work with him. Paco now has his full Service Dog status and can go anywhere the public has access, including all of Yeahsen’s hospital and doctor visits, school, restaurants, stores, etc.
ly training Paco to help Yeahsen, now 17, to run Unified Track, which includes both typical kids and special needs kids, for Zionsville High School. This will be Yeahsen’s 4th year in track, and he has never completed the 100-meter race without stopping. We hope that Paco will help him meet this goal, as he’s got a more task-oriented personality than Harmony did (she tended to be more social). The story of how Paco got his name is very touching to us. Jack Spohn had enjoyed going to Mexico every year at New Year’s with a group of dear friends, who eventually nicknamed him Paco. After losing her beloved husband Jack to kidney cancer, Nancy’s friends sponsored the costs of training an ICAN puppy and changed his name to Paco in Jack’s honor. Watching puppy Paco early on and knowing that he would eventually go on to improve life for a disabled individual helped Nancy immensely in her grief journey. She believes that Jack’s generous spirit lives on in Paco. The cost of training a service dog for 2 years is over $25,000, so ICAN does extensive fundraising to keep the cost low for families. We paid ICAN $2,500 as a placement fee for Paco. There are no extra charges for the ICAN trainers, who are always available, to assist us as Yeahsen grows and changes. Do you have a service pet? Would you like to nominate someone else to be in an upcoming issue of Special Needs Living? Email us at SpecialNeedsLivingIndy@n2pub.com
Purchase an ICAN 2021 Calendar!
• Adorable images of ICAN pups-in-training! • PAWfect for holiday gifts and stocking stuffers! • Your purchase will help ICAN train service dogs for people with disabilities. To learn more, visit icandog.org
Photo credit: Liz Kaye
It’s worth pointing out that Paco is a “facilitated service dog” which means he obeys my commands rather than Yeahsen’s commands. The main reason for this is safety. There were many times when Yeahsen would wonder off, and if Paco were to go with him, they would both be lost. To solve that problem, I give the stay or “anchor” command and no matter how much Yeahsen pulls him, he will not move, thus keeping Yeahsen safely where he needs to stay. Likewise, there are times that Yeahsen refuses to walk with me. Paco is commanded to walk and no matter how much resistance Yeahsen gives, Paco will pull him gently with us. It helps that Yeahsen is 83 lbs. and Paco is 81 lbs. It has been 5 months, and so far, we have made more progress with Paco then we could have ever imagined. We are current-
Cold Noses. Warm Hearts. Dogs are amazing creatures. Their gifts to humanity are loyalty, love and service. For over a decade, ICAN has been successfully placing dogs into meaningful relationships with children and adults who have physical and developmental disabilities and may need assistance with daily activities. We also place dogs into special needs facilities throughout Indiana.
To learn more about the type of service dogs we place, please visit icandog.org or call 317-250-6450
5100 Charles Court | Suite 100 Zionsville, IN 46077
www.icandog.org November 2020 • Special Needs Living
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meet the
Chris & Becky
Cash Family By: DeAndra Yates | Photos by: Nightingale + Willow - Leah Parks
Nearly six years ago I was introduced to this feisty, forwardthinking, and very loving momma bear named Becky Cash. My life had recently taken an unexpected turn and I must admit that I believe that our connecting was very intentional. She has assisted me along this incredible journey that we call life and I believe by sharing a glimpse of her family’s story, you will find comfort in her strength and resilience in her faith. Becky and Chris Cash have been married for over 21 years. Chris grew up in Kentucky and Becky in Ohio. Becky smiles when she speaks about her husband Chris and how their marriage has sustained through all of life’s challenges. She confidently admits that it is his love coupled with their faith in God that has allowed for them to navigate this incredible hand that they have been given. Chris and Becky Cash are parents to six amazing children Gabriel, Mikaela, Faustina, Catherine, Adeline, and Pauline. The couple runs a very successful business with the Shaklee Organization as well as Becky having a private practice as a Naturopathic Practitioner. Complications of Becky’s own health when she was very young and that of her children directed the couple to take this career path. It also allows for the freedom they need to be able to care for their children and attend doctor appointments without the added pressures of a traditional work schedule. Chris and Becky work together like a dynamic duo. Often Chris is at home with the children while Becky is pouring her knowledge and heart into a family or an individual that may be experiencing similar struggles. While at their home one evening Chris said to me, I do what I do at home so she can go out in the world and be great! That statement was said with tons of love and adoration for what his wife does, at
12 Special Needs Living • November 2020
the same token Becky says she could not imagine a better mate to be on this journey with. His love and understanding for her advocacy and the call on her life is one to be admired, as his courage to be a stay home dad is one to be highly noted. Before the couple met and had any children of their own, Becky and her husband had worked with children with special needs at a summer camp. She jokingly laughs and says, “God was preparing us individually for what was to become a huge part of our life story.” The diagnosis and abilities of her children span across a broad range. From mitochondria disease to juvenile diabetes, autism, Lyme disease and partial paralysis. The Cash family has a child who is wheelchair-bound, life did not start off with her being paralyzed to any degree, the aggressiveness of her disease has caused a significant change in her abilities over the years. Becky and I spent a few minutes talking about the impact that this has had on her other children. It is one thing for your children to grow up seeing their sibling disabled or ably different but there is a different impact when the turn is sudden or progressively changes over time. The family for many years saw their loved one walking, talking, and being full of life
Faustina
Becky made a few things clear to me that although their marriage is very strong, and they have a united front. They do however have heated discussions on different diagnoses on what things could be. A lot of that comes from denial due to what they have seen. That even as a power couple life is not always easy and that they are constantly trying to figure out what each child needs. Becky and her husband have learned to navigate the needs of their children and who can handle what. They both make time to do Pauline one-on-ones as well as spend as much family time together as possible. One of the family’s hobbies is eating. When ask their favorite restaurant Becky laughs, she said well that just depends. With eight people in the home, moods tend to sway, especially when six of them are women. We both laughed. Most of the time the agreement lands on Chipotle, Chilis, or Qdoba.
Catherine
Gabriel & Chris
Mikaela
Adeline
to now seeing her on some days unable to speak, wheelchair transfers, and her energy level decreasing. At times she may not have the energy to even get out of bed and other days energy just beams through her smile, the unknown makes it difficult. Becky spoke candidly about how she believes and knows how this is impacting the other five children. She said to me that with the progressive diagnosis she often feels it may affect the faith of her other children. One of her chief prayers is Lord prepare my children for what is to come, and Lord please do not put more on us than you can help us to handle. I found this to be very powerful. She went to add the other kids are going to be fine, they are going to be stronger because of what they have seen their siblings experience. Becky believes that there needs to be an active effort to take care of the needs of every member of the family as equally as possible. They seek a family therapist as well to assist in working through the makeup of their household as they strive to meet the needs of all their children. “There is a constant awareness of watching for signs and symptoms in our other children.” Becky Cash
From the outside looking in one may never expect the complexity of their journey. They live in a suburban upper middle-class neighborhood, they have a gerbil and a cat, they own a family van. When outsiders see this, they only get a glimpse of the story. The Cash family has come to own their complexities and it never stops them from living life. They vacation often, with Disney and anywhere with a beach being their favorite destination. Becky did share with me that with the different diagnosis, it is not often that all eight family members get to travel together, however for Christmas they have a tradition of traveling to Cincinnati, OH to be with her family and the kids love the jokes of Uncle D. Something profound that Mrs. Cash shared with me was even when they are in the middle of the ocean, they never get away their children’s illness and disabilities, you never get away from it, it becomes who you are. The Cash family attends St. Alphonsus Liguori Church, which is in Zionsville, IN. Becky states that church is very accommodating to families with special needs as well as adults with disabilities. This is important because their family is a true example of one that walks by faith and not by sight and having a comfortable place to exercise that faith and worship is key to keeping them grounded. In closing I ask Becky what her advice would be to other families who are navigating this journey of special needs, uncertainty, and disabilities. “My advice would be to families of children and loved ones with special needs is to never give up and never believe the limits that others put on you and your loved ones. Always follow your instinct. Remember that this is about getting from point A to Z, whatever that may be. Every human being has the right to reach their God-given potential whatever that may be. A diagnosis is not a potential it is just a starting point. Something about the finality makes you come to terms with the reality of diagnosis but then you quickly move into the now what. She went on to add, I don’t want families to feel as if God has forgotten them.” 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
November 2020 • Special Needs Living
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14 Special Needs Living • November 2020
Amazing
young achiever By: Heather French
INDIANA MISS
AND BRENNA FRENCH Last year, my daughter Brenna French participated for the first time in a national program called Miss Amazing, which is a pageant for special needs girls (https://www.facebook.com/IndianaMissAmazing) and had a wonderful time. Each girl has a mentor assigned to her to help them through the daylong pageant. How did you hear about this organization?
We discovered Indiana Miss Amazing through a Facebook post, most likely in one of the groups I am part of for parenting special needs children. The organization was founded in 2007 by Jordan Somer, a 13-year-old from Omaha, Nebraska who was already a volunteer for Special Olympics. She wanted to do more for the disabled women and girls who were Special Olympics athletes and within a few months, she got the first Miss Amazing pageant of the ground. By 2015 the program had expanded to 30 states.
What were your favorite parts of the experience?
Watching her participate in an event that welcomed her just as she is and seeing her on stage showing what she can do was the best part for me. The things she CAN do are often overlooked because people tend to focus on everything that is a struggle for her to do. How did participating with Miss Amazing have an impact on her?
I think participating allowed Brenna to see that she and others are bigger than their struggles. Plus it gave her moments to practice public speaking on a stage in front of an audience of people who are supportive!
Who can participate?
The pageant is open to participants age 5 and up. There is even a division for adults. The winners from each age division in every state get to participate in the National Miss Amazing Gala, where everyone is a queen and gets to proudly wear her crown. If you have a girl with disabilities in your life and would like more information on participating, it can be found on the Miss Amazing website http://in.missamazing.org/.
Name someone you admire. What makes them special and how have they motivated you?
Brenna is inspiring to me. She’s 14 now, Freshman at Hamilton Southeastern high school. She has accepted her struggles with fetal alcohol spectrum disorder and proudly advocates for awareness of FASD and avoiding alcohol during pregnancy.
What did you have to do to prepare for the event?
The fun part of preparing was shopping for outfits for Brenna to wear during the different parts of the pageant. For Brenna the pageant included an optional talent portion. She chose to play piano, so she had to practice the song that she wanted to play.
We would love to highlight your achievements, milestones & accomplishments!! To share your story or nominate someone else to be in an upcoming issue of Special Needs Living? Email us at SpecialNeedsLivingIndy@n2pub.com
November 2020 • Special Needs Living
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WELCOME TO
caregivers & healthcare corner By Lisa M. Monge, MSN, RN
November!
Do you know a caregiver that should be recognized?
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. In your community, what healthcare questions and concerns do you have?
Lastly, healthcare is a vital necessity for all Hoosiers. Ensuring access to appropriate and optimal healthcare is non-negotiable and a human right. What changes would you like to see with your healthcare team?
I would love to hear your thoughts! Please contact me to highlight successes and bring awareness to challenges or fill out the online form at https://form.jotform.com/202605155839154 Please contact me at specialneedslivingnurse@gmail.com
Health can be anything including physical, social, mental, emotional and social well-being. Promotion of health can also include prevention of disease, injury and illness skill development.
16 Special Needs Living • November 2020
Stay healthy, Nurse Lisa
November 2020 • Special Needs Living
17
meet malorie blake
By: Maria Smietana
& her family
Malorie Blake has some blunt advice for fellow parents of special needs children: “Don’t waste your time and energy on the comparison game. I did it for so long, especially in the beginning. It only prevents you from seeing your child’s true potential.” A mom of three, Malorie grieved for a long time after the birth of her oldest child, knowing that the life she had envisioned for her daughter would not be her reality. Nevertheless, Makenzie, now 8, has continued to grow, change, and meet milestones, just like any kid. They [special needs children] will get there,” Malorie said. “It may look different, but they will get there.” Makenzie is a third grader at Yorktown Elementary School in Yorktown, Indiana. She has her dad’s long, lanky limbs and distinctive eyes, and her mom’s winning smile. For the majority of the school day, she attends mainstream classes but has an individual education plan (IEP) and also attends special education class. Additionally, the school provides her with services such as physical, occupational and speech therapy (PT, OT, ST). A 1:1 aide is with her throughout the day. Makenzie’s younger sister Arya, 5, is a kindergartener at Pleasant View Elementary. The Blake’s youngest child is son Bo, 2. Originally from the Harrisburg area, the Blakes moved to Indiana in 2019, when Malorie’s husband Josh took a job as a superintendent with WestRock Company in Eaton, IN. A graduate of the University of Pittsburgh, Malorie is a registered dietician who consults for other nutrition professionals. Her business is home-based, allowing her the flexibility to take Mackenzie to outpatient PT, OT, and ST at IU Health, therapy she needs in addition to what the school system provides for her. Though school and therapy take up much of Makenzie’s week, sports are as much a part of her life as they are for other kids. “Depending on the season, Makenzie likes to swim and play adaptive sports such as baseball,” her mom said. “She also does adaptive skiing, rides her adaptive bike, and participates in horseback riding.” Her quieter passions include reading, playing on her iPad, and listening to music. “She loves anything with a good beat--it doesn’t matter if it is rock, country, pop, or hip-hop. She also likes to watch the Wiggles.” Leaving the house, whether for dining out or going on vacation, requires a bit more planning for the Blakes than for the average family. “Having a special needs child definitely influences where we eat,” Melanie said. “We need to make sure there is adequate space and seating so that her wheelchair can fit. We don’t eat at
18 Special Needs Living • November 2020
restaurants often, but Makenzie loves Blaze pizza!” Thankfully, Makenzie has always been able to eat by mouth and has had no dietary restrictions. “Because of my profession, we are very health-conscious,” Malorie said. “I have worked a lot with nutrition intervention to help those with neurodevelopmental issues, so we incorporate some of these strategies with Makenzie’s daily intake. She is a big vegetable eater-that child will ask for seconds of most veggies I make her!” But-no surprise-pizza is still her number one favorite. “For the holidays and special celebrations, family usually travels to us since it is hard to travel with so much equipment and three kids,” Melanie laughed. “When we do travel, we do things water related, since Makenzie loves the water. We go to Kalahari [Resorts] which offer indoor and outdoor swim parks. Being well-prepared is the best advice I can give. Call ahead, ask around, research places for accessibility features.” When the Blakes moved from Pennsylvania, they chose Yorktown based on the school district’s amazing reputation, and they’re grateful to have found a remarkable community, too. “We have such amazing people in our neighborhood,” Malorie said. “It is stressful enough moving to a new state and not knowing anyone, but moving with a special needs child is a whole other animal. We could not be happier with the support Makenzie receives at school, and since day one our community has been so inclusive and supportive.” The neighborhood has great walking trails, so the whole family often takes walks in the evenings and on weekends. And it’s not a far drive to Fishers, where the Roy G. Holland Park has an awesome playground that is wheelchair accessible and has swings that Makenzie loves. The Blakes are big Disney fans, so they watch a lot of Disney musicals when relaxing at home. Makenzie especially loves Moana. On football days, mom roots for the Steelers and dad for the Eagles, while Makenzie happily cheers for both. Parents of special needs children are always looking for ways to improve their child’s life and the Blakes are no exception. In the near future, Makenzie will be receiving a skilled companion dog through Canine Companions for Independence, something she is very excited about. Skilled companion dogs are trained to work not only under the supervision of the special needs individual,
but under a facilitator, which is usually a parent or other caregiver. To learn more about Canine Companions, see www.cci.org. Thanks to clinical research pioneered by Duke University, the other big event in Makenzie’s future will be receiving an infusion of sibling [umbilical] cord blood, which was saved when her little brother was born. Using cord blood for children with cerebral palsy has shown promise at improving both motor and cognitive function. “We have been following the research for quite a while now and will soon be able to receive the treatment for Makenzie,� said Malorie. https://pediatrics.duke.edu/news/umbilical-cord-blood-improvesmotor-skills-some-children-cerebral-palsy. “Being a special needs parent is hard, no need to sugar-coat it,� Malorie said. “But it is also incredibly awesome at the same time. Watching your child defying odds and reaching milestones (however small) really puts things into perspective.  Once you get the diagnosis (whatever that may be), your priorities change.  When Makenzie was first born, I felt so overwhelmed, lonely, and scared. I grieved for the child I was “supposed� to have. But as time went on, we learned to adapt, and we embraced this way of life. Having a supportive community, friends, and family has been a big part of our healing journey.�
special needs families that want to share their stories and resources with others, and you can find local friends, too. Would you like to share your story or nominate someone else to be in an upcoming issue of Special Needs Living? Email us at SpecialNeedsLivingIndy@n2pub.com
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Malorie still finds comfort in re-reading the “Welcome to Holland� essay, written by Emily Kingsley in 1987, about raising a child with a disability. “If you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland,� reads the last sentence. https://www. dsasc.ca/uploads/8/5/3/9/8539131/welcome_to_holland.pdf
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Above all, Malorie encourages families of special needs children to connect with each other, whether in person or virtually. “I have found the Instagram community to be a huge network of
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November 2020 • Special Needs Living
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20 Special Needs Living • November 2020
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THE ABC’S OF IEP’S Welcome to the inaugural issue of Special Needs Living and the first installment of “The By: Sheila Wolfe IEP Services ABC’s of IEP’s.” My purpose for this column is to inform parents of children with special needs about how to get an appropriate education for their student in the public schools. This content will also benefit all parents and caregivers who seek to educate themselves about the needs of their loved one with special needs and how to best address those needs. Before we jump into our first “lesson,” let me tell you a bit about myself and my journey through the special education jungle. My son, Cory, was diagnosed with autism at three years of age. He is twenty-four now—it makes me feel so old every time I say it. Our journey through the Carmel, Indiana school system was anything but smooth. By the time Cory was six and in the first grade, the school filed a due process complaint against me. For those who aren’t aware, under the Individuals with Disabilities Education Act(IDEA), due process is a formal way to resolve disputes about a child's special education and is similar to a hearing in court. A due process complaint can be filed against the school system or a parent in order to enforce the student's right to a Free Appropriate Public Education. The school also filed a lawsuit for attendance violations because I was taking Cory out of school in the afternoons to attend an Applied Behavior Analysis (ABA) program at my own expense. You can imagine my amazement, since I had called the Department of Education to make sure the school’s funding would not be affected in any way before I made the decision to pull him out for half days. In addition, children are not required to attend school until they are seven in Indiana, and as I already stated, Cory was six. A brief discussion with the judge got the lawsuit taken care of (without me having to hire an attorney). The due process complaint was another matter. I believe to this day that one of the school’s strategies was to try to make it too expensive for me to afford an attorney to defend me in both the lawsuit and the due process hearing while also paying for ABA therapy for my son. If you are not already aware, ABA therapy is expensive. Their strategy would have worked, but I was able to get the Indiana Protection and Advocacy Service (IPAS) to represent me against the due process complaint. Long story short, the school won the due process hearing. The hearing officer said that Cory should be in school for a full day. However, that changed nothing in my mind, and I continued to pull Cory out for his half days of ABA therapy. My goal was to collect enough data on the effectiveness of ABA so that I could
force the school to use that methodology when instructing Cory. I felt that the school was attempting to prevent me from collecting this data. About seven case conferences later, the tide turned, and I had a one-on-one aide for Cory who would be trained in ABA and work with him all day, every day. Word spread rather quickly, and my phone started to ring from parents calling for advice and help with their child’s case. The rest, as they say, is history. After a couple years of helping people informally and getting extensive training in special education law, I became a professional Parent Advocate and work all over Indiana helping people get appropriate IEP’s for their children with special needs. I work with every disability category and have particular expertise in autism and behavior intervention. Each month I will discuss another aspect of developing an appropriate IEP for students with special needs. Topics will include your right to a Free Appropriate Public Education (FAPE), evaluation and identification, IEP content, progress monitoring, goal writing, services, supports, accommodations and so much more. My goal is to keep content general enough that you will find answers to many of your questions about special education each month. Additionally, I will provide links to more in-depth information for those who want to learn more. Developing, monitoring, and evaluating the effectiveness of your child’s IEP can feel like a fulltime job. Together, I hope we can make that job a little easier! Sheila A. Wolfe | IEP Services, LLC | sheilawolfe@sbcglobal.net
Do you need help getting your child with special needs the services they NEED and DESERVE at school? Professional Parent Advocate with 20 Years Experience Specializing in Developing IEPs that WORK Experienced in All Disability Categories Autism Expert Helping families receive a meaningful education for their children in public schools
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November 2020 • Special Needs Living
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the gregg family By: Heather Gregg Written by: Rae Swift Photos by: Jessica Rene Photography
Heather and Josh are Indiana natives; they’re from Centerville and Newburgh. They stayed local for college; Heather went to IUPUI and Josh to Indiana University in Bloomington. They met through a friend at a Coldplay concert 15 years ago. They moved into their Whitestown neighborhood a couple of weeks before their youngest was born. As a family, they like to go to the park and eat out at LA Café or Stone Creek in Zionsville. Their favorite vacation spot is Captiva Island, Florida where all they use to get around is a golf cart. They love eating pizza and watching America’s Funniest Videos. Their oldest is Lilah, 7, who enjoys going to the spa with her mom to get pedicures. She’s a cheerleader and soccer player and likes to go fishing with her dad. Her sister, Ivy, 3, loves dancing and playing with her friends. Lilah and Ivy love to put on concerts for their parents in their basement. Their favorite singers are Katy Perry, Ed Sheeran, and Taylor Swift. As a couple, Heather and Josh attempt regular date nights, concerts being a standard favorite. Josh even enjoys playing guitar.
Josh, Heather, Lilah, Ivy
22 Special Needs Living • November 2020
And Heather, she’s passionate about photography and a nonprofit she started after finding out her youngest Ivy had Down Syndrome at 14 weeks pregnant. “This gave us a lot of time to learn about down syndrome and honestly, grieve the diagnosis.” The Lucky Mama Project, a project she began with Down Syndrome Indiana, offers support to new mothers who find out their child has Down Syndrome either during pregnancy or at birth. “The fear of the unknown while I was pregnant was hard. Not knowing what life would be like with a child with special needs was very scary
for us at the time. We educated ourselves, connected with other parents in the community, and were ready for her when she was born” Heather says. After her birth, Ivy was in the NICU for 17 days before she was able to come home with both oxygen and a nasogastric tube. Over time, she became stronger. Heather says Ivy has changed them for the better. “She has really made us appreciate the little things. She’s opened my heart and mind to people with disabilities… she inspires us with her strength and light. I think that she has made her sister more accepting of kids that are different.” And Heather’s advice for parents with kids with special needs: “As parents of children with special needs, I think we tend to put so much of our time and energy into them. We want to do everything we can to give them the best life. It’s important to remember to take some time for ourselves. Whatever it may be, even if it’s as simple as 10 minutes alone or treating yourself to Starbucks. It’s something that I am trying to be better at myself.” She says that sometimes the worries get the best of her. That thinking about Ivy’s future can be overwhelming, but she just tries to take things one day at a time and remind herself that she is doing great. She ultimately just wants her to be healthy, happy, and accepted. Ivy has proved to be one of the most amazing little humans Heather has ever known. “Our family is obsessed with her and life is SO much better than I envisioned it while pregnant.” 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
November 2020 • Special Needs Living
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pioneer parents in indiana By Angela Arlington
ABOUT
DAWN MCGRATH In 1995, Dawn McGrath was in her 9th year of teaching special education. She and her husband had some concerns about their two-year-old son, Christopher, and so they had him evaluated. Chris was diagnosed with autism just a few months before turning three. “I thought I knew everything about special education until that moment when I realized I knew next to nothing. It is one thing to have technical knowledge, compassion, and professional dedication. It is an entirely different thing to see it in the eyes of your toddler and personally feel the advocacy,” McGrath confessed. It was in 1997 when Chris taught Dawn a lesson that would last a lifetime. “My preschooler arrived home from a field trip to the Children’s Museum. As he ran circles in the living room humming songs, I peppered him with questions about his day like mothers are taught to do. I knew he was still unable to put together words to respond to me, and after a while I was overcome with self-pity. I sat on the floor quietly with tears pooling up in my eyes, sad that I may never be able to communicate with my son. It was then, in my silence, that I heard what my son was singing - it was the most beautiful little reproduction of the music from the carousel at the Children’s Museum! In his own perfect-pitch, multiple-sounds-at-the-same-time way, he WAS telling me about his day! His expression was far more powerful and personal than words. It was then that I committed to listen to my son on his terms, and as an extension, figure out how to measure and value the unconventional development of children with unique circumstances.” In 1998, she was part of a team of Pike Township elementary teachers who built a new elementary school dedicated to celebrating each student’s “personal best.” She then set forth with them to create a software program which measured incremental performance indicators aligned to state standards. In January of 1999, Dawn attended a parent advo-
24 Special Needs Living • November 2020
cate training and over lunch happened to mention her project to Bob Marra, the Indiana Special Education Director of Education at that time. Dawn smiled and shared, “Before that weekend was over, Bob said, ‘If we fund your project, will you share it with others across the state?’ The grant began January of 2000 and ended under the Bennett administration ten years later.” During that decade, Dawn contributed to a number of advancements for special education, “We designed and provided state software to measure incremental standards that made up the alternative assessment, ISTAR. We also designed the electronic state IEP system so that users would have prompts throughout the case conference committee process to ensure a comprehensive and complaint process. All of this might not seem that revolutionary here in 2020, but twenty years ago before these systems were provided, many of the forms were cut and paste or hand-written and many of the references were without accountability support built into the processes.” Dawn’s contributions to special education empowered families and staff with inventories to measure students’ strengths and data to support more comprehensive planning for student needs. Although ISTAR has now been replaced with IAM and the contract for the original electronic IEP now belongs to an external proprietary entity, the
original work for the state initiated the process of leveraging technology to serve students receiving special education services during a time when these tools and technical skills were not widespread. As for little Christopher, he went on to get a Bachelor’s degree in Communication and “gave back” by serving as an instructional assistant for students with significant needs once he graduated. He is now working with Voc Rehab services to explore further career options. Dawn currently teaches university courses, provides strategic planning services for school corporations, and treasures time with her family. Dawn describes the years of working for children and young adults across the state as a time where she felt exceptionally blessed. “My career, my family, and my passions were all aligned. It made everything in my life make sense. It focused my purpose. There is an unspoken understanding between parents of students with disabilities that connects us all to each other within the special education community, one of the most steadfast affiliations I have known. It is in giving of ourselves to each other where we truly find the greatest joys.” 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
TIIBA Celebrates 10 Years! By Angelica N. Gray, MA, BCBA, LBA Founder & CEO The Indiana Institute for Behavior Analysis
The Indiana Institute for Behavior Analysis (TIIBA) is excited to embark upon 10 years of Empowering Lives! Founded in January 2011, TIIBA has laid an impactful foundation over this past decade of empowering the lives of our clients, their families, our employees, and the community! Our Clients have had successes from saying their first words, becoming independent in toileting, transitioning into school, graduating from high school, to starting their first jobs! Our services support clients across the lifespan and we are excited for the growing number of ways that lives will be changed in the coming decade! Our Families have been empowered through our awareness events and obtaining early diagnosis and intervention. We have provided support and education on IEP laws and our families have learned to implement the procedures and techniques of ABA to see problem behavior decrease within the home and in the community. TIIBA has connected our families to resources and empowered them to be the only voice that matters for their child! Our Employees have grown their skills and knowledge through our monthly professional development days. We’ve intentionally created a diverse culture and implemented a financial wellness program to start our employees on their journey to become debt free! TIIBA has been intentional about the personal growth of our team members and look forward to the personal and professional successes of our employees over the next decade and beyond! Our Community has been positively impacted by our annual outreach activities – which includes our Spring Autism Awareness Block Party, Family Day at the Indianapolis Zoo, Fall Harvest Festival, and Winter Wonderland Dance. These events allow for inclusion, awareness, diversity, and increased compassion and empathy. We’ve accomplished so much within this first decade and we are excited about what the future holds! We are located on the Northwest side of Indy and in Downtown Evansville. Learn more about our organization by visiting www.tiiba.org. November 2020 • Special Needs Living
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Events provided by : Brittany Lowe Event Executive
local events
26 Special Needs Living • November 2020
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 coring due to risk of suffocation; and any person with a medical condition, mental health condition or disability which prevents wearing a face covering. Since COVID-19 is still among us there is a possibility that the events listed and places to go could be canceled, rescheduled, or closed. Please confirm event status and below listed details before going from contact info provided below in case-specific event details have changed since posting.
Special Needs Living Launch Party Sunday, November 15, 2020 To allow for social distancing we are offering Two times: 1-2:30pm or 3-4:30pmLocation: LEL Tour: 5936 N Keystone Ave. Indianapolis, IN 46220 Come out to the launch party for Special Needs Living Magazine. There will be Face painting, DJ, balloon twister, activities & prize giveaways. You will also get the chance to meet other families and the supporters of Special Needs Living Magazine. Space is limited to RSVP let us know how many are in your party and what time you will be attending you can email SpecialNeedsLivingIndy@n2pub.com or Register for the 1-2:30pm time at Specialneedslivingmagazinelaunchparty. eventbrite.com for the 3-4:30pm time at https://www.eventbrite. com/e/124348897901 Tuesday-Sunday (Closed Thanksgiving) 10am-5pm Children’s Museum Indianapolis 3000 North Meridian Street Indianapolis, IN 46208 Recurrent events during regular hours such as Dinosaurs Up Close, Be an Underwater Archaeologist, Life in the Pond, and more!
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
Sensory Friendly Hours First Sunday of Every Month 10-12pm Conner Prairie 13400 Allisonville Road Fishers, Indiana 46038
Dinner with Santa Nov. 28-29 5:00 pm -7:00pm Conner Prairie 13400 Allisonville Road Fishers, Indiana 46038
- Provides a sensory map that identifies areas that are sensory-heavy, as well as those that may be less stimulating. - Social Narratives that show photos of some of the areas that may be appealing and areas that might be over-stimulation. - Visual checklist packet that includes instructions, picture cards, and a template to make a schedule for the day. - Barrier-free access - complimentary ticket for therapist/caregiver - emergency red phones/first aid - Deaf & hard of hearing services - mobility services - sensory map available - Exhibits that make noise will be turned off. -All quiet spaces can be used and staff trained in Sensory Friendly Practices will be on hand in case anyone needs assistance. - Price: $4 (members are free). Tickets available at the box office. - All ages
Christmas at the Zoo Nov. 21 – Dec. 10 5pm – 9pm Open until 10pm Fri-Sat Closed Thanksgiving Day Indianapolis Zoo 1200 W. Washington St. Indianapolis, IN 46222 - accessible parking - fully accessible ramps - low-grade slopes - entrances with ramps - box office ticket accessible window - accessible picnic tables - two rides available without leaving wheelchair (carousel and skyride) - signage with descriptions, videos with captions - service animals on leashes are permitted at the zoo
Breakfast with Santa Nov. 28-29 8:30 am- 11:30 am Conner Prairie 13400 Allisonville Road Fishers, Indiana 46038
Autism Parents’ Support Group of Indiana (Facebook) FREE Virtual Weekly Meetings (Google Meet) (Virtual Fun and Games @ 11am Last Saturday of each month) The Arc of Indiana 2020 Virtual Conference & Impact Awards Luncheon Virtual sessions held throughout the week of November 9. More on Nov. 13. The Arc of Indiana and Self-Advocates of Indiana conference/Impact Awards luncheon - recap of election results - impact awards presentation - living well session 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
November 2020 • Special Needs Living
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By: Erin Boaz
SIBLINGS PERSPECTIVE
My name is Paige Boaz, I am 18 years old and the middle child sandwiched between my two brothers. My oldest brother, Tyler Boaz, who has special needs, is 20 years old. What makes our journey unique is that we have been going to the same high school together for the last 3 years. We are both Seniors at Fishers High school and on track to graduate in May 2021. We also have a younger brother, Gabe, who is a 6th grader at Fall Creek Intermediate.
Tyler was diagnosed with Autism and speech delay at the age of five. Witnessing how he has been treated differently and unjustly has changed my perspective on how to be more kind, compassionate, and patient with others. I have experienced too many people being judgmental exclusively towards my brother and I quickly learned that I wanted to be the one person in his life that would always be there to support him. No one deserves to be treated any less for who they are. This has motivated me to become more involved in the community to be an advocate and friend to those with special needs. I have volunteered in the Best Buddies program since freshman year in high school and also serve Sundays in the Special Needs room at church to give parents an opportunity to go to service while creating a fun and safe space for their child. Since Tyler has been a big part of my life for the last 18 years, I have been able to see life through a different perspective due to
28 Special Needs Living • November 2020
his different challenges. I have witnessed him overcome many obstacles, and more importantly, I realized that he is capable of much more than I could imagine. If I were to give advice to others that have encounters with kids with special needs is to first, be patient. Just as important, I would encourage you to help them in the areas where they struggle and always be the one person that believes in them; specifically take time to recognize their strengths and help them find ways to use those strengths to their advantage. Most importantly, be their biggest fan and lift them up, especially when things are difficult and challenging.
One of my favorite memories with Tyler is when we go bowling together. As much as he tries to aim the bowling ball down the middle, it tends to land in the gutter. What amazes me is how it doesn’t bring him down. He is such a good sport. You should see him when he knocks down all the pins! He gets so excited, claps his hands and jumps up and down with the biggest smile on his face. A more recent memory and a way that I enjoy spending time with Tyler is when we are in the car together as I take him to and from work. He always asks how my day is going and shares interesting and funny stories from his long shift at work. I treasure these memories because his stories are told with passion and detail. It has been a great way to bond and grow closer.
An inside family joke is how knowing that when my friends come over, no matter how many times he has met them, he will likely get their name wrong. No one is ever offended and we just laugh every time it happens. I know we all have challenges in life. The one challenge I experience with Tyler is that he often misinterprets what is being said. It can be frustrating because it creates miscommunication. The best way I know how to overcome it is remembering that we all have strengths and weaknesses. Instead of being upset about the situation, I make an effort to talk to him to pinpoint where there was a breakdown in communication. Tyler’s drive to become independent is admirable, but can come with a set of challenges as well. He has set goals to go to college, live independently, have a career, and get married one day. Sometimes that drive to be independent can bring out a quality of stubbornness which can be challenging for him to open his mind to hear my side of the story. I try to lead by example by patiently hearing him out because I have learned that his stubbornness
increases when he does not feel understood. When he feels heard and I tell him I understand where he is coming from, we are able to see each other’s side and compromise. One of my favorite activities with Tyler is playing video games. The best part is when we get to work together and cheer each other on, with a goal to beat the other team. We like to get Dunkin’ Donuts together, just the two of us. One of the things I really admire about Tyler is his passion for movies. He puts in endless hours researching all types of newly released movies, the backstory of why the story was created, how popular it was amongst certain age groups and how much money it grossed. He follows a couple of YouTubers to gain more insight on how to create his own YouTube channel. I am so proud that Tyler started his own YouTube channel where his focus is on sharing a variety of information about the movie to include the history, fun facts, and of course his opinion. Another quality I really admire about Tyler is his work ethic. He puts in 100% at everything he does, especially when it comes to school and his job. He motivates me to put forth the same level of effort he does. But the one thing that I love about Tyler the most is his huge heart. He is one of the most selfless people I know. He genuinely cares for other people’s feelings and I strive daily to be more like him in that way. 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 November 2020 • Special Needs Living
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Family Voices non profit spotlight By: Paul Hathcoat - Special Needs Director White River Christian Church
OF INDIANA
In the world we live today, it is often difficult to connect with others. We are regularly spread out, hunkered down, distracted, self-focused but also lonely. For families caring for children with health care needs and disabilities, that environment can lead to isolation and hopelessness as they seek resources and connections within the healthcare system. There is hope though! Family Voices Indiana is a non-profit organization based in Fishers, IN. They are dedicated to “being a family-to-family resource that strives to help families access the system from the inside, in order to achieve better outcomes for their loved ones,” says Holly Wheeler, the organization’s Executive Director. They achieve this through supporting families who have children and youth with special health care needs and/or disabilities through education, outreach and community partnerships. Their mission statement places a high priority on providing “information, training and one-on-one support” to help families “make informed decisions, advocate for improved systems and policies, and to build partnerships between professionals and families.”
30 Special Needs Living • November 2020
There are many non-profits in our world that seek to improve the lives of those they serve. What is different about Family Voices Indiana though, is their individual personal experiences which all employees share. Director Wheeler explained that “every employee at FVI has a child with a special healthcare need or disability,” and that, “they themselves have struggled to navigate the healthcare system while caring for a child with significant challenges and disabilities.” This dynamic has created a group of people focused intently on truly connecting with families and individuals, not just providing services and education for them. Outside of their assistance to help families navigate the health care system, FVI also endeavors to connect families with community services, respite opportunities, legal services and recreational activities. Are you aware of the free community connections options around you? Does your child need a summer camp that is equipped and capable of supporting them well? Would you like
your child to get involved in 4H or take local swim lessons but also have their health conditions managed as to not be a barrier to participation? These questions and more were answered in our discussions with the FVI team. They “advocate for inclusion and connect families with activities and experiences that match their needs and desires,” says Holly Wheeler. The benefits and the necessities of human connection and mutual support between families and people sharing their lives through difficult situations is well documented. Studies and research have actually shown that families who receive family-to-family support have better outcomes, and that is exactly what Family Voices Indiana is all about. “I hope they walk away from reading this article just knowing that they are not alone” says Wheeler. “We have people ready and willing to talk, support, guide, and befriend those around us in need, and, we’re never closed!”
There are several ways that you can connect and get involved with Family Voices Indiana. They have three Facebook pages, one of which is in Spanish. They are active on Twitter (@FVIndiana), Pinterest, LinkedIn and Instagram (family_voices_indiana) as well. Their main website link is http://www.fvindiana.org/, and contact number is 844-F2F-INFO (844-323-4636). Thank you to Holly Wheeler and her team for meeting the needs of so many families and individuals in our communities.
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
November 2020 • Special Needs Living
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but did not really get to the root cause of conditions.”
Dr. Stephen Pfeifer, MD, CNHP, CFMC
Lori Varas, CFMC
Dr. Anass Sentissi, HCHC, CFMP
sponsor of the month By: Maria Smietana
For families seeking answers to the challenges faced by their special needs child, traditional medicine treatments sometimes comes up short as they do not identify specific underlying causes or imbalances. Functional Medicine looks at every patient as a bio-individual. Each patient possesses unique biochemical characteristics, just like fingerprints. Even for patients with the same condition, their contributing imbalances may be very different. That is why, for optimal results, health decisions should incorporate understandable, actionable information about one’s biochemistry. The Functional Medicine analysis provides this insight with precision and is augmented by research-backed nutraceutical recommendations. Anass Sentissi founded Wholestic Nutrition in 2011 as a way to meet that need using coaches and cutting edge science. “I believe that food is medicine and that achieving profound health, sheer vitality, and jubilant wellness is the result of mindful eating,” Sentissi said. “It is my mission to assist the world in practicing the art of this philosophy and of achieving individual wholism.” Sentissi completed his undergraduate studies at the Institute of Integrative Nutrition and contributed as a research assistant in a PhD program in music
32 Special Needs Living • November 2020
astrology at Indiana University. He graduated from Functional Medicine University with a diploma of nutrition and certification as a functional medicine practitioner. He became internationally known for his successful programs in weight loss, diabetes management, inflammation and more. He and his team at Wholestic Nutrition combine functional medicine approaches with immunology, endocrinology, toxicology and nutrition. One of Sentissi’s key collaborators is Dr Stephen Pfeifer, a graduate of Indiana University, Indiana University School of Medicine, and the Methodist Hospital Family Practice program. Dr. Pfeifer oversaw the expansion of a large traditional primary care practice in Fishers for over 20 years. “In this traditional medicine setting, I was a trusted advocate for innovative thinking and quality care,” he said. “However, I slowly evolved my philosophy toward a more holistic functional medicine approach. I realized that traditional treatments were valuable
He began advanced training in holistic functional circles as a member of the International College of Integrative Medicine (ICIM) and the American Academy of Anti-aging (A4M). Networking with like-minded thought leaders in this arena helped him develop a center of excellence for Lyme disease, autism, dementia, autoimmune syndromes and complex disorders that were not responding to traditional approaches. He just finished training as a certified natural holistic practitioner (CNHP) at Trinity School of Natural Health and also as a certified functional medicine coach at the Wholestic Nutrition Functional Medicine Institute. “Because of advancements in technology, clinicians now have an affordable comprehensive menu of treatment options that address the root cause of chronic disease syndromes, neurocognitive conditions, etc.,” Dr. Pfeifer said. “Never before has there been a greater need for a personalized approach that utilizes all of these new modalities after addressing common imbalances. The TELE-HEALTH platform allows flexible scheduling for families and allows the needed time for a comprehensive work up and treatment plan. This is often difficult in a traditional office-based practice. Because of the complexities of this approach, it is quite valuable to work with a certified health coach who has had extensive training in functional medicine protocols, and access to expanded advanced lab testing through Evexia Diagnostics. Examples include saliva DNA methylation pathway analysis, GI mapping for parasites and leaky gut markers, food allergy testing with a FIT inflammation test, intracellular micronutrient analysis, heavy metal toxic burden determination, mitochondrial dysfunction testing, and detoxification system analysis.” Since the founding of his practice, Sentissi and his team have helped
clients heal from a variety of challenging health concerns. No matter where you are in your healing journey, his team will do everything in their power to find effective solutions that will empower your lifelong health. “What sets Wholestic Nutrition apart is that the health coaches work with premiere thought leaders who are experts in functional medicine protocols, and that utilize the most advanced scientific testing available,” Dr. Pfeifer added. Functional medicine is now being employed more frequently in the testing and treatment of children with autism. Every 20 minutes another child in the US is diagnosed with autism. In 2010 the Center for Disease Control (CDC) reported that 1 in 68 children has been identified with autism spectrum disorder, an increase from 1 in 88 in just a two-year period, while some sources report numbers even higher than these. While these numbers are staggering, they do little to reflect how these disorders affect families. “This alarming rise in autism spectrum disorder seems to parallel an equally alarming rate of chronic degenerative conditions,” Dr. Pfeifer said. “Dementia, autoimmune conditions and syndromes such as chronic fatigue syndrome, fibromyalgia, PANDAS, POTS, etc., are now commonplace. Medical systems are doing their best to keep up with innovations, but never before has there been such a great need for multi-system functional medicine platforms. Our bodies and genes were never designed to withstand this modern unprecedented daily exposure to environmental toxins in our food, air, and water.” Supporting children with autism typically involves a multi-faceted, complex treatment program. For many families and providers alike, the missing piece has been genetic testing. Through
identification and treatment of genetic defects these children may greatly improve their symptoms and overall quality of life. At Wholestic Nutrition we understand the higher occurrence and impact of MTHFR and COMT SNPs in patients exhibiting developmental disorders such as autism and ADHD. Wholestic Nutrition is all about root cause resolution… digging deep into the cause of your health concerns. Start your journey to health today with our unique functional medicine programs. Become a patient or study to become a Functional Medicine Health Coach. Both options are open with Wholestic Nutrition. Book a free consultation at https://wholesticnutrition.com. Wholestic Nutrition (317) 429-0111 https://wholesticnutrition.com/dr-stephen-pfeifer https://wholesticnutrition.com/ @wholesticN support@wholesticnutrition.com https://wholesticnutrition.com/addressing-autism-fromfunctional-medicine-perspective November 2020 • Special Needs Living
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A MOMENT OF
inspiration -
mom
BY A SPECIAL NEEDS By: Maureen Marsh
Wife, Special Needs Mother, Pharmacist, Unapologetically Ginger I recently read a parenting article titled “The six types of Mom friends you need”. I skimmed through the six categories, nodding and vaguely recognizing the different stereotypical maternal archetypes, and although I could logically see the advantage to having many Mom perspectives, my Mom perspective is anything but typical. Consequently, my experience with motherhood and other Moms is also atypical. You see, I’m the mother to a very unique 5-year-old boy with a rare congenital brain malformation called Dandy-Walker syndrome. My pregnancy and birth experience was fairly average, but when my son began having trouble staying on the growth curve and meeting milestones, we were sent for a consult with a neurosurgeon. A head CT and a very traumatic consultation later, we were sucker-punched with a rare diagnosis. Diagnosis day was awful, but what followed was nearly unbearable. I was 38 when I had my son, so I had amassed a decades-long arsenal of many different types of friends: childhood friends, high school friends, college friends, work friends, and neighbor friends. Some are parents, and many of those parents had children much older than my son. I also happen to have a fairly decent number of middle-aged friends who never had kids, both by chance and by choice. During the early days after my baby’s diagnosis, I was very fragile and fearful and very, very vulnerable. I began to isolate myself and found it very difficult to be around other small children. I avoided my neighbor whose son was around my son’s age, and I hid or deleted many people from social media that had recently had babies. It was self-preservation – I simply could not look at what “typical’ kids were doing. My son had balance and coordination dif-
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ficulties and low muscle tone. At 9 months, he wasn’t even sitting independently, let alone holding a bottle, crawling, or pulling to stand. I was very selective about whom I chose to tell our news in the beginning, but I knew it was just a matter of time before people would begin to suspect a problem. The months passed and my son’s development felt like it was in slow motion. Because of his delays we sought the help of all of the therapies and specialists available to us. My days were filled with appointments to doctors and home visits from First Steps of Indiana. My nights were filled with hot tears and worry. I stopped calling people. I stopped going out. And slowly, people started to notice. One particularly rough day, my phone rang and the caller ID showed the name of a friend that lived out of state. As much as I wanted to talk to her, I still didn’t have the words to explain what was happening. She left a message that said “Hi Mo, it’s me. I just wanted you to know that I’m thinking of you and I’m here for you if you want to talk. And if you don’t want to talk, that’s ok too. You don’t have to do anything. I love you.” She is childless by choice, and she said the exact right thing to a Mom in crisis. My Mom friends had a mixed bag of reactions. I told some of my college “friends” at an awkward dinner one night and didn’t hear from them for a year. A few Mom friends were very positive and well-meaning, but would push for playdates or activities that they clearly did not realize were challenging for me and my son. We drifted apart. A few tried the misery Olympics talk- “oh ALL kids have challenges”. So the invites and the phone calls dwindled. Then a curious thing began to happen. In spite of my best efforts to push everyone away, I still got invitations, but only from cer-
tain friends. Not all of those friends were friends with each other, either. So what did they have in common besides me? THEY ARE ALL CHILDLESS. I got a Christmas White Elephant party Evite, a New Year’s party invitation, followed by texts asking about dinner, drinks, girls night, art gallery shows, brunch, film festivals, and silent auction charity events. My childless friends are smart, interesting, politically active, and involved in every way in the community. And best of all they still include me, even though they know I can’t attend the majority of these events. Even though they know I don’t have the time, money or energy to be as involved, they don’t leave me behind. They’re inclusive, and to this Momma who spends a lot of her precious time and energy pushing for inclusivity for her child, it’s so refreshing to know they do the same for me. It makes me feel energized and uplifted. Fast forward several years and my little monkey is thriving. He is walking, talking, and going to kindergarten. He still has many challenges, but is a total joy. He will likely always need help with certain things but he’s so charming and lovable, people are just naturally drawn to him and want to help. I like to talk about him and his progress, but I also need to resist the temptation of losing myself in this journey as a Special Needs Mother. My childless friends are key in helping me live this balanced life. They ask about him, they are genuinely concerned for him, but they also have a lot of other things to talk about. They don’t
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give me pitiful stares, and they don’t give me unsolicited parenting advice. I’m not their project or their charity case. There’s no Mompetition or Mom shaming tactics. They don’t judge me or my parenting choices, and they also don’t avoid the tough questions when the topic of his prognosis arises. With them, I am not a social pariah. They accept us for who we are and where we are at on this journey. I am still buddies with a select few Mom friends, and thanks to the internet I also have a lot of virtual Mom friends of kids with special needs. I am grateful to talk about parenting with them at times. However, if I’m 100% honest with myself, I feel most at ease with the women who are also in their own way on a less-traveled path in life. I’ve been fortunate enough to have many types of friends through many seasons of life, and I’m open to the idea that this may continue to change and evolve over time. But for now here we stand, in the middle of life, and our biology will soon remind us that we are rendered incapable of conceiving, no matter our previous fate. As we link arms and stare down menopause together, I wonder if these childless women realize that they have Mothered me in the highest, most sacred sense- by showing me unconditional acceptance and love.
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
Special Needs Planning & Elder Law Attorney
Here to help you put plans in place to give you peace of mind. Elizabeth A. Homes is a special needs planning and elder law attorney. She has been licensed and practicing law since May of 2014. Her practice at the Law Office of Elizabeth A. Homes LLC is focused on Special Needs Planning, Guardianships, Elder Law, Estate Planning, and Probate Work. This includes Wills, Powers of Attorney, Advanced Directives, Trusts, Trust Administration, Medicaid Planning, Special Needs Planning, Guardianship, and Probate. She is admitted to practice law in the State of Indiana. We ask "What If?" so you don't have to ask "What Now?"
Elizabeth A. Homes, Esq., MBA ehomeslaw.com | 317-660-5004 elizabeth@ehomeslaw.com 10412 Allisonville Road, Suite 200A Fishers, Indiana 46038
November 2020 • Special Needs Living
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36 Special Needs Living • November 2020
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