Madison’s world

A day in the life of a teenager who is part of an invisible population



Kelly Brown/Elly Photography

On a school day, Madison Turner’s parents wake her up at 6 a.m. Nearing the end of her sophomore year at Memorial High School, Madison loves school. Waking up and putting on her school uniform, however, Madison loves less.

Her father, Michael Turner, talks about his family’s morning routine with the same head-shaking and exhausted smile of all parents of teenagers. “It’s crazy,” he says over his second cup of coffee. “The mornings only work if we stay within routine.”

After a smoothie breakfast, Madison and her 12-year-old sister Megan are driven to school by their mother Lisa Turner, who works at Mental Health Association Oklahoma. As she heads into Ms. Jenny Joy’s classroom Madison is greeted by her fellow classmates. 

Lisa Schroeder, Jenny Joy and Madison during a recent school day.


In 2001, Michael and Lisa were expecting their first daughter. Thirty-one weeks into an otherwise uneventful pregnancy, Lisa had extreme back pain. Madison was born nine weeks early with her umbilical cord wrapped around her neck. She was not breathing. Michael and Lisa waited a few agonizing minutes before hearing a “soft, faint squeak” and seeing Madison rushed to the Neonatal Intensive Care Unit. It was four weeks before they could take their daughter home. 

Over the next several months, they recognized Madison was not meeting growth and development markers. In early 2002, when Madison was 9 months old, she was diagnosed with cerebral palsy resulting from her traumatic birth. Michael says the diagnosis “sucked the air out of our lungs.” 

The Mayo Clinic defines cerebral palsy as “a disorder of movement, muscle tone or posture that is caused by damage to the immature, developing brain, most often before birth.” The condition manifests on a wide-ranging scale. For some, a cerebral palsy diagnosis is not associated with intellectual disabilities. But others, like Madison, suffer from related cognitive impairments.

By the time Madison was 6 years old, her parents had received additional diagnoses of autism, epilepsy, intellectual disabilities and a speech communication disorder. Thanks to guidance from their physical therapist, Julie Wilson, the Turners applied for the In-Home Support Waiver through the Developmental Disabilities Services Division of the Oklahoma Department of Human Services (DHS) when Madison was a baby. 

When a person is selected from the waiting list, they receive financial support to help pay for supplies related to an intellectual disability diagnosis, such as diapers, formula and adaptive equipment. These services are funded through Medicaid Home and Community Based Services, waivers and state funds. Services provide for assistance for individuals to live safely at home rather than being placed in a nursing home.

At the time the Turners initially applied, Michael says a family would typically wait seven or eight years to receive support through the Developmental Disabilities Services Division (DDSD) of Oklahoma DHS. As of December 2016, DDSD was reviewing applications dated from 2006. In March 2017, 7,501 Oklahomans were waiting to receive this financial support. If a person applied to the waiting list today, they would likely wait at least 10 years.

Eventually, Madison was approved to receive support that provided significant relief to the Turner family budget. But then Michael was offered a job in Texas, and the family relocated.

“We got our services in Texas in a snap,” Michael remembers. But being so far away from the support of extended family, including Michael’s mother, who is a retired speech pathologist and has worked with Madison since her birth, became too great a burden on the family of four. The Turners returned to Oklahoma but were refused the services they had received before relocating. They signed up again, at the bottom of the waiting list. 

At the time, Michael and Lisa both worked in education. Money was tight. They reached out to their State House Representative Jeannie McDaniel for help. “(Rep. McDaniel) was very in-touch with our needs,” Lisa says. “She believed that adequately funding the waiting list needed to be a priority.”

McDaniel has since termed out of office, but one of her last acts in the Oklahoma House was to sponsor a bill that financed disability expenses and provided tax-sheltered savings options for parents of children with disabilities. House Bill 2821 was signed into law in 2016. 

The Turners call this support a blessing, but they still face the costs of adaptive equipment, nutritional supplements, and necessary safety and accessibility modifications to their house. 

They are still on the waiting list.


At 16 years old, Madison is tall, with thick brown hair and an enviably clear complexion for a teenager. She usually says only one word at a time from her modest vocabulary. Most often, she repeats one of her favorite words, “happy.” She alternates between walking and sitting in her adaptive wheelchair. She generally wants to participate in whatever her sister is doing.

Megan calls Madison a “greeter.” She thrives when she’s around people (unique for someone on the autism scale), likes for other people to shake hands or hug each other, and laughs when she hears a sneeze. 

Madison with her sister Megan. Kelly Brown/Elly Photography

When Madison was a toddler, the Turners were told she would never be able to walk. They attribute her ability to overcome that particular diagnosis to Bit By Bit, a therapeutic horse riding center for people with special needs in Oologah. Michael says the core strength and psychological courage she gained from horseback riding have carried her to new heights. She continues to ride every week and lights up around horses.

Like many parents of teenagers, the Turners look toward high school graduation with some anxiety. Students like Madison can stay in school until their 21st birthday. But after her students graduate, Ms. Joy says many of them end up staying at home. Michael says this is “due to lack of financial resources and very few opportunities for employment, recreation or opportunity to live with peers.” 

The ripple effect of an adult child with disabilities living permanently at home, with few prospects for outside interaction, is predictably trying for caregivers. The Turners worry that for many parents, high school graduation means the “beginning of a downward spiral when a caregiver is required to remain at home, leading to isolation, mental and physical health challenges, limited financial options and burnout.”

Since Madison’s diagnosis, this fear of the unknown has become a common element of the Turners’ lives. A few years ago, they founded Project Special Courage, a nonprofit to educate others and advocate for families like theirs. 

Michael, a veteran of the U.S. Marines and a former administrator in higher education, spends his days in a small downtown office on Greenwood Avenue. As the executive director of Project Special Courage, he helps families navigate the support systems available to people with intellectual disabilities, acquire adaptive equipment and provide recreational opportunities like disability-friendly kayaking, swimming and hiking. He also works toward long-term systems change at the state level.

Meanwhile, in order to address the need of child care for individuals with special needs during the summer, Lisa works with Ms. Joy, Tulsa Public Schools and the Center for Individuals with Physical Challenges to organize transportation and facilities for an extended summer program for the students in Madison’s class.

All of these additional responsibilities take a toll on the marriages, other children, finances and physical wellbeing of caregivers. “Until you experience life under our roof,” Lisa says, “it’s hard to understand how consuming it can be.”


Meanwhile, in Ms. Joy’s classroom, Madison is holding hands with her peer tutor. It’s mid-morning, and the 11 special-needs students, one teacher, four para-professionals and two peer tutors form a circle for an innovation of Ms. Joy’s: Joy Chi. The modified tai chi exercises allow students to focus on intentional movement and breathing — a pause from their busy day of life skills-centered learning.

Left: Madison is a sophomore at Memorial High School. She interacts with Kaelina Ellis, a peer tutor, to practice “Joy Chi,” modified tai chi movements that focus on movement and breathing.

After school, Madison goes home. She eats a snack, watches TV, plays with her sister and her dog, Linus, and loves to eat dinner on the couch. Sometimes, Linus stays with Madison on her bed until she falls asleep.

Michael describes life as a roller coaster for parents of children with disabilities. “Except on this ride, you can’t see what’s coming,” he says. “Sometimes, when you hit the bottom, it’s like everything stops. There’s no operator. You are strapped in. You don’t know what to do.”

One of the Turners’ goals in founding Project Special Courage was to shed light on their own personal roller coaster. 

“Our population is often invisible,” he says. “If you don’t know someone with an intellectual disability, you don’t think about it. So they disappear. And their parents disappear.” 

And that handicaps all of us.

 

How to be an advocate

• Volunteer through Project Special Courage: specialcourage.org

• Apply for the “Partners in Policymaking” nine-month course through Oklahoma Developmental Disabilities Council: okddc.ok.gov/partners_in_policymaking.html

• Contact your state representative to express support for adequate funding of the Waiver Request Waiting List.

 

Add your comment:

 

 

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May 2017

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The Colony
2809 S Harvard Ave
Tulsa, OK
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Telephone: (918) 794-4208
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Where:
Soundpony
409 N Main St
Tulsa
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Telephone: (918) 582-7669
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Michael Wallis launches his new book, The Best Land Under Heaven, The Donner Party in the Age of Manifest Destiny. Cutting through 160 years of mythmaking, Wallis presents the ultimate cautionary...

Where:
Tulsa Historical Society
2445 South Peoria Tulsa
Tulsa, OK  74114
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Telephone: 918.712.9484
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Where:
River Spirit Casino - 5 O'Clock Somewhere Bar
8330 Riverside Pkwy.
Tulsa, OK  74137
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This is a four day Baseball tournament   https://mabeecenter.com/oru-baseball-2017/

Cost: TBD

Where:
7777 S Lewis Ave
Tulsa, OK  74171
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Telephone: 918-495-6000

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Four day baseball tournament    For more information visit the link below https://mabeecenter.com/event/summit-league-tournament_2017/

Cost: $9 - $74

Where:
J.L. Johnson Stadium
7777 S Lewis Ave
Tulsa, OK  74171
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Telephone: 918-495-6000
Contact Name: Mabee Center
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The Champions of Health awards recognize those who make a difference in the health of Oklahomans. Winners in select categories will receive $5,000 for their organization or program, and will be...

Cost: 0.00

Where:
, OK


Sponsor: Oklahoma Caring Foundation
Contact Name: Ben Johnson

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Where:
Comedy Parlor
328 E 1st St
Tulsa, OK
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Telephone: (918) 921-3535
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‘A Woman’s Eye’ MAINLINE is excited to present a new exhibit featuring 3 local photograhers Tahlia Ball, Christina Parson & Madison Rayon. From ‘quiet...

Cost: free

Where:
MAINLINE ART BAR
111 n main street
tulsa, OK  74103
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A Loony Bin favorite!!! Mark's mastery of the English language as he narrates hilarious tales of sex, parenting, marriage, drinking, horse racing and history coupled with rapid fire one-liners...

Cost: $12 with reservations, $14 without reservations

Where:
68th and Memorial
6808 S Memorial Ste 234
Tulsa, OK  74133
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Telephone: 918-392-5653
Contact Name: The Loony Bin Comedy Club
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Gates open at 7:30.

Cost: $8

Where:
Philbrook Museum of Art
2727 S Rockford Road
Tulsa, OK
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Where:
Soundpony
409 N Main St
Tulsa
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Telephone: (918) 582-7669
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Where:
Soul City
1621 E 11th St
Tulsa, OK
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Telephone: (918) 607-6005
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Where:
River Spirit Casino - Volcano Stage
8330 Riverside Pkwy.
Tulsa, OK  74137
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Where:
River Spirit Casino - Landshark Pool Bar
8330 Riverside Pkwy.
Tulsa, OK  74137
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Where:
River Spirit Casino - 5 O'Clock Somewhere Bar
8330 Riverside Pkwy.
Tulsa, OK  74137
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Sketch comedy, music, and some yodeling by Jack Allen and friends.

Cost: $12-$20

Where:
Tulsa Performing Arts Center - Charles E. Norman Theatre
110 E. 2nd St.
Tulsa, OK  74103
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Telephone: 918.596.7122
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Cost: $10

Where:
Vanguard
222 N Main St
Tulsa
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Telephone: (319) 804-9727
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Where:
The Colony
2809 S Harvard Ave
Tulsa, OK
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Telephone: (918) 794-4208
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Where:
The Boxyard
502 East Third Street
Tulsa, OK
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Where:
Mercury Lounge
1747 S Boston Ave
Tulsa, OK
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Where:
Hunt Club
224 N Main St
Tulsa
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Telephone: (918) 599-9200
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Rescheduled from April, Tokyo in Tulsa presents this traditional celebration of the blooming of Japanese Cherry Blossoms, featuring movies on the lawn, karaoke, cosplay, and more.

Where:
Guthrie Green
207 N Boston Ave
Tulsa, OK  74103
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Where:
American Legion Post 308
11328 E Admiral Pl
Tulsa, OK
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Where:
Hard Rock Hotel and Casino - The Joint
777 W Cherokee Street
Catoosa, OK  74105
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This is a four day Baseball tournament   https://mabeecenter.com/oru-baseball-2017/

Cost: TBD

Where:
7777 S Lewis Ave
Tulsa, OK  74171
View map »


Telephone: 918-495-6000

More information

Four day baseball tournament    For more information visit the link below https://mabeecenter.com/event/summit-league-tournament_2017/

Cost: $9 - $74

Where:
J.L. Johnson Stadium
7777 S Lewis Ave
Tulsa, OK  74171
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Telephone: 918-495-6000
Contact Name: Mabee Center
Website »

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Celebrate the US of A with a variety of events and activities, including a car and motorcycle show, pin-up contest, live music, pet contest, and an old-fashioned cruise down Route 66 from one side...

Where:
Route 66 Village
3770 Southwest Blvd
Tulsa, OK
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The Oklahoma Swing Syndicate (TOSS) hosts a Swing dance and lessons  The Oklahoma Swing Syndicate (TOSS) is the only UNESCO recognized dance organization in Oklahoma.  We are a 501c3...

Cost: $7

Where:
Community Center - South Minister Presby Church
3500 So Peoria
1/2 west of Peoria, on 35pl behind the church
Tulsa, OK  74102
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Sponsor: The Ok Swing Syndicate
Telephone: 918-450-691
Contact Name: Rita Robbins
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‘A Woman’s Eye’ MAINLINE is excited to present a new exhibit featuring 3 local photograhers Tahlia Ball, Christina Parson & Madison Rayon. From ‘quiet...

Cost: free

Where:
MAINLINE ART BAR
111 n main street
tulsa, OK  74103
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More information

A Loony Bin favorite!!! Mark's mastery of the English language as he narrates hilarious tales of sex, parenting, marriage, drinking, horse racing and history coupled with rapid fire one-liners...

Cost: $12 with reservations, $14 without reservations

Where:
68th and Memorial
6808 S Memorial Ste 234
Tulsa, OK  74133
View map »


Telephone: 918-392-5653
Contact Name: The Loony Bin Comedy Club
Website »

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Making plans for this weekend? You can't do better than The Drunkard & The Olio at the historic Spotlight Theater. You know you've always wanted to go, and now's your chance. And if...

Cost: Adults $20, kids $12, seniors & military $17

Where:
Spotlight Theater
1381 Riverside Dr.
Tulsa, OK  74127
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Cost: $30

Where:
Brady Theater
105 West Brady Street
Tulsa, OK  74103
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Where:
The Colony
2809 S Harvard Ave
Tulsa, OK
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Telephone: (918) 794-4208
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Cost: $5

Where:
The Blackbird on Pearl
1336 E 6th St
Tulsa, OK
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Telephone: (918) 949-1345
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Where:
Soundpony
409 N Main St
Tulsa
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Telephone: (918) 582-7669
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Where:
River Spirit Casino - Volcano Stage
8330 Riverside Pkwy.
Tulsa, OK  74137
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Where:
The Fur Shop
520 E 3rd St
Tulsa, OK
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Telephone: (918) 949-4292
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Where:
The Run
3141 E Skelly Dr
Tulsa
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Telephone: (918) 746-8271
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Cost: $7-$10

Where:
Vanguard
222 N Main St
Tulsa
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Telephone: (319) 804-9727
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Where:
Yeti
417 N Main St
Tulsa
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Telephone: (918) 936-4994
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Where:
Zin Urban Lounge
111 N. Main St.
Tulsa, OK
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Telephone: (918) 500-3958
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Set in 1898, this play tells the story of the female pioneers who overcame tremendous odds and settled together in the all-black town, Nicodemus, Kansas.

Cost: $15-$17

Where:
Tulsa Performing Arts Center - Liddy Doenges Theatre
110 E. 2nd St.
Tulsa, OK  74103
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Telephone: 918.596.7122
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Where:
River Spirit Casino - Landshark Pool Bar
8330 Riverside Pkwy.
Tulsa, OK  74137
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Website »

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Where:
River Spirit Casino - 5 O'Clock Somewhere Bar
8330 Riverside Pkwy.
Tulsa, OK  74137
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Where:
Fassler Hall
304 S. Elgin Avenue
Tulsa, OK  74120
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Telephone: (918) 576-7898
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Where:
Comedy Parlor
328 E 1st St
Tulsa, OK
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Telephone: (918) 921-3535
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Cost: $15-$50

Where:
Vanguard
222 N Main St
Tulsa
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Telephone: (319) 804-9727
Website »

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Where:
Hard Rock Hotel and Casino - The Joint
777 W Cherokee Street
Catoosa, OK  74105
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Website »

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Where:
Hard Rock Hotel and Casino - The Joint
777 W Cherokee Street
Catoosa, OK  74105
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Website »

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Where:
Mercury Lounge
1747 S Boston Ave
Tulsa, OK
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Burlesque performers spin a wheel to choose a random song, then improvise a performance. The best wins The Gilded Wheel.

Cost: $18-$25

Where:
IDL Ballroom
230 E 1st St.
Tulsa, OK  74103
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Telephone: (918) 551-7447
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Where:
Hunt Club
224 N Main St
Tulsa
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Telephone: (918) 599-9200
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Where:
Billy and Renee's
6373 E 31st St
Tulsa, OK
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Telephone: 918-836-0655
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