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.

 

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July 2017

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Where:
Hunt Club
224 N Main St
Tulsa, OK
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Telephone: (918) 599-9200
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Cost: $10

Where:
The Venue Shrine
112 E. 18th St.
Tulsa, OK
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Telephone: (918) 949-1345
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Cost: $10

Where:
Vanguard
222 N Main St
Tulsa, OK
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Telephone: (319) 804-9727
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Where:
Utica Square
21st Street and Utica Avenue
Tulsa, OK
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Philbrook will host a talk with Chicano watercolor artist Wenceslao Quiroz, whose art is currently displayed in Cheech MarinÕs collection.

Where:
Philbrook Museum of Art
2727 S Rockford Road
Tulsa, OK
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Cost: $5

Where:
Comedy Parlor
328 E 1st St
Tulsa, OK
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Telephone: (918) 921-3535
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Presented by The STEMcell Science Shop

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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Cost: $20

Where:
Safari Joe's H2O Water Park
4707 E 21st St
Tulsa, OK  74114
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Telephone: (918) 749-7385
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See dozens of 4-H and livestock exhibits.

Where:
Expo Square - Exchange Center & Pavilion
4145 E 21st St
Tulsa, OK
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Cost: $39-$49

Where:
Hard Rock Hotel and Casino
777 W Cherokee Street
Catoosa, OK  74105
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Where:
Hard Rock Hotel and Casino - Cabin Creek
777 W Cherokee Street
Catoosa, OK  74105
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This exhibit features the work of Photographers of Tulsa Oklahoma Group, a group of talented local photographers that includes novices to seasoned professionals. PHOTOG members encourage and help...

Cost: free and open to the public

Where:
McKeon Center for Creativity
910 S. Boston Ave.
TCC Metro Campus
Tulsa, OK  74119
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Sponsor: McKeon Center for Creativity
Telephone: 918-595-7339
Contact Name: Cindy Barton
Website »

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This traveling exhibition curated by Josephine Stealey, chronicles a history of American basketry from its origins in Native American, immigrant, and slave communities to its presence within the...

Cost: Free

Where:
108|Contemporary
108 E M.B. Brady St
Tulsa, OK  74103
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Sponsor: 108|Contemporary
Contact Name: Ellen McGivern

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 join us in welcoming current Tulsa Artist Fellowship participant CARRIE DICKASON and her lively, inquisitive exhibit 'Revealing Patterns'.       'Revealing...

Cost: free

Where:
mainline art bar
111 n main street
tulsa, OK  74103
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Telephone: 918-704-3330
Contact Name: katy eagleston

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Performances Fri., July 21 at 7:00 p.m Sun., July 23 at 2:30 p.m Thurs., July 27 at 7:00 p.m Fri., July 28 at 7:00 p.m Sun., July 30 at 2:30 p.m Tickets Tickets will go on sale...

Cost: $10.00

Where:
Boston Avenue Church
1301 S Boston Avenue
Tulsa, OK  74119
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Sponsor: Music Office
Telephone: 918.699.0138
Website »

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Where:
American Legion Post 308
11328 E Admiral Pl
Tulsa, OK
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Where:
Ed's Hurricane Lounge
3216 E 11th St
Tulsa, OK
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Telephone: (918) 587-6426

More information

Cost: $10

Where:
Vanguard
222 N Main St
Tulsa, OK
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Telephone: (319) 804-9727
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Where:
River Spirit Casino - Volcano Stage
8330 Riverside Pkwy.
Tulsa, OK  74137
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Where:
Smitty's 118 Tavern
118 East Main St
Jenks, OK
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Telephone: (918) 995-2277
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Cost: $30-$40

Where:
River Spirit Casino - Paradise Cove
8330 Riverside Pkwy.
Tulsa, OK  74137
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Website »

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

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Monster mud trucks get down and dirty.

Where:
Tulsa Raceway Park
3103 N Garnett
Tulsa, OK
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Telephone: (918) 437-7223
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Come face to face with dinosaurs.

Cost: $18-$34

Where:
Cox Business Center
100 Civic Center
Tulsa, OK  74103
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Telephone: 918.894.4350
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Cost: $10

Where:
Comedy Parlor
328 E 1st St
Tulsa, OK
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Telephone: (918) 921-3535
Website »

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Where:
Inner Circle Vodka Bar
410 N Main St
Tulsa, OK
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Telephone: (918) 794-2400
Website »

More information

Where:
River Spirit Casino - 5 O'Clock Somewhere Bar
8330 Riverside Pkwy.
Tulsa, OK  74137
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Website »

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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:
Oklahoma Jazz Hall of Fame
5 S Boston Ave
Tulsa, OK
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Telephone: (918) 928-5299
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Accio dancing shoes! DJs Uber and Afistaface will be spinning enchanting tunes.

Where:
The Unicorn Club
222 E 1st Street
Tulsa, OK  74135
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Telephone: (918) 551-7447

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Where:
Utopia Bar & Lounge
3508 S Sheridan Rd
Tulsa, OK  74145
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Where:
Dusty Dog Pub
5107 S Harvard
Tulsa, OK
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Telephone: (918) 933-5473
Website »

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Cost: $10

Where:
Comedy Parlor
328 E 1st St
Tulsa, OK
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Telephone: (918) 921-3535
Website »

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Where:
The Max Retropub
114 S Elgin Ave
Tulsa, OK
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Telephone: (918) 895-6200
Website »

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Where:
The Fur Shop
520 E 3rd St
Tulsa, OK
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Telephone: (918) 949-4292
Website »

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Where:
The Bistro At Seville
10021 S Yale Ave
Tulsa, OK
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Website »

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

More information

Where:
Hunt Club
224 N Main St
Tulsa, OK
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Telephone: (918) 599-9200
Website »

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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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Broadway at Boston Avenue presents a musical comedy that shows loving families come in all shapes and sizes.

Cost: $10

Where:
Boston Avenue Methodist Church
1301 S Boston Ave.
Tulsa, OK  74119
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Where:
Pepper's Grill
2809 E 91st St
Tulsa, OK
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Telephone: (918) 296-0593
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Grab a snack, find a seat, and let your imagination run wild! Each weekend in July, we’ll look at timeless truths from Hollywood blockbusters. At every service, you can expect a...

Cost: Free

Where:
Life.Church
7071 E. 121st Street S.
Bixby, OK  74008
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Sponsor: Life.Church
Telephone: 918-938-0900
Contact Name: Lesley Hemphill
Website »

More information

This exhibit features the work of Photographers of Tulsa Oklahoma Group, a group of talented local photographers that includes novices to seasoned professionals. PHOTOG members encourage and help...

Cost: free and open to the public

Where:
McKeon Center for Creativity
910 S. Boston Ave.
TCC Metro Campus
Tulsa, OK  74119
View map »


Sponsor: McKeon Center for Creativity
Telephone: 918-595-7339
Contact Name: Cindy Barton
Website »

More information

Car need washing?  Bring it on down to Jiffy Lube, 2726 S. Harvard, on Saturday, July 22 from 10:00 a.m. to 2:00 p.m.  The car wash will be hosted by Crossroads Clubhouse, a local...

Cost: Suggested donation

Where:
Jiffy Lube
2726 S. Harvard Ave.
Tulsa
OK, OK  74114
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Sponsor: Jiffy Lube
Telephone: 918.743.4720
Contact Name: Jason
Website »

More information

Practice your bird watching skills by picking up a bird species coloring sheet in the Visitor Center before you explore the Garden. Tulsa Botanic Garden is open Tuesday through Sunday from 10am...

Cost: FREE for Garden members; $8 for ages 13+; $4 for ages 3–12. 2 & under Free

Where:
Tulsa Botanic Garden
3900 Tulsa Botanic Drive
Tulsa, OK  74127
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Sponsor: Tulsa Botanic Garden
Telephone: 918-289-0330
Website »

More information

This traveling exhibition curated by Josephine Stealey, chronicles a history of American basketry from its origins in Native American, immigrant, and slave communities to its presence within the...

Cost: Free

Where:
108|Contemporary
108 E M.B. Brady St
Tulsa, OK  74103
View map »


Sponsor: 108|Contemporary
Contact Name: Ellen McGivern

More information

Good Morning Bedlam is performing at Starship Records! Good Morning Bedlam's show is an explosion of energy with soaring harmonies, a banjo player that scissor-kicks in the air, a string...

Cost: Free

Where:
Starship Records
1241 S Lewis Ave
Tulsa, OK  74104
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Contact Name: Christian Cole

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Children's Musical Theatre Main Stage production of "ANNIE" features area students ages 7-17 as the cast of this classic musical.  The cast rehearses and performs 4 to 5 shows on...

Cost: $14-$24

Where:
Bartlesville Community Center
300 SE Adams Blvd
Bartlesville, OK  74003
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Sponsor: Children's Musical Theatre of Bartlesville
Telephone: 918-336-0558
Contact Name: Jan Watt
Website »

More information

 join us in welcoming current Tulsa Artist Fellowship participant CARRIE DICKASON and her lively, inquisitive exhibit 'Revealing Patterns'.       'Revealing...

Cost: free

Where:
mainline art bar
111 n main street
tulsa, OK  74103
View map »


Telephone: 918-704-3330
Contact Name: katy eagleston

More information

Cost: $10-$45

Where:
ONEOK Field
201 N. Elgin Ave
Tulsa, OK  74120
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More information

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
Website »

More information

Join RSVP of Tulsa at the new ballroom of the River Spirit Resort Casino for an evening of great food, music, dancing, and great silent auction items!  Summer casual attire - feel free to wear...

Cost: $125.00

Where:
River Spirit Resort Casino
8330 Riverside Drive
Tulsa, OK  74136
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Sponsor: RSVP of Tulsa, Inc.
Telephone: 918.280.8656
Contact Name: Jovada Miller
Website »

More information

Performances Fri., July 21 at 7:00 p.m Sun., July 23 at 2:30 p.m Thurs., July 27 at 7:00 p.m Fri., July 28 at 7:00 p.m Sun., July 30 at 2:30 p.m Tickets Tickets will go on sale...

Cost: $10.00

Where:
Boston Avenue Church
1301 S Boston Avenue
Tulsa, OK  74119
View map »


Sponsor: Music Office
Telephone: 918.699.0138
Website »

More information

Where:
The Max Retropub
114 S Elgin Ave
Tulsa, OK
View map »


Telephone: (918) 895-6200
Website »

More information

Where:
Crow Creek Tavern
3534 S Peoria Ave
Tulsa, OK
View map »


Telephone: (918) 749-9100
Website »

More information

Where:
Elwood's
1924 Riverside Dr
Tulsa, OK
View map »


Telephone: (918) 949-9090
Website »

More information

Cost: $10

Where:
Comedy Parlor
328 E 1st St
Tulsa, OK
View map »


Telephone: (918) 921-3535
Website »

More information

Where:
The Cottage Art Gallery
1443 S Gary Ave
Tulsa, OK
View map »


Telephone: (918) 728-1928
Website »

More information

Where:
Hunt Club
224 N Main St
Tulsa, OK
View map »


Telephone: (918) 599-9200
Website »

More information

Where:
River Spirit Casino - Volcano Stage
8330 Riverside Pkwy.
Tulsa, OK  74137
View map »


Website »

More information

Where:
The Wine Loft
7890 E. 106th St. S.
Tulsa, OK
View map »


Telephone: (918) 970-4766
Website »

More information

Where:
Mercury Lounge
1747 S Boston Ave
Tulsa, OK
View map »


Website »

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Where:
River Spirit Casino - LandShark Pool Bar
8330 Riverside Pkwy.
Tulsa, OK  74137
View map »


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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Where:
River Spirit Casino - 5 O'Clock Somewhere Bar
8330 Riverside Pkwy.
Tulsa, OK  74137
View map »


Website »

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Inner circle goes tiki with Caribbean cuisine, tropical drinks, live music, and fire performers.

Where:
Inner Circle Vodka Bar
410 N Main St
Tulsa, OK
View map »


Telephone: (918) 794-2400
Website »

More information

Where:
The Colony
2809 S Harvard Ave
Tulsa, OK
View map »


Telephone: (918) 794-4208
Website »

More information

Where:
Hard Rock Hotel and Casino - Cabin Creek
777 W Cherokee Street
Catoosa, OK  74105
View map »


Website »

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Where:
Riverwalk Crossing
300 Riverwalk Terrace
Jenks, OK  74037
View map »


Website »

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Where:
Starship Records & Tapes
1241 S Lewis Ave
Tulsa, OK
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Telephone: (918) 583-0638
Website »

More information

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

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Where:
Soul City
1621 E 11th St
Tulsa, OK
View map »


Telephone: (918) 607-6005
Website »

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Where:
Soul City
1621 E 11th St
Tulsa, OK
View map »


Telephone: (918) 607-6005
Website »

More information

Cost: $5

Where:
The Blackbird on Pearl
1336 E 6th St
Tulsa, OK
View map »


Telephone: (918) 949-1345
Website »

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TULtalk


Details Make DoubleShot's New Digs Extra Special

Old bricks and reclaimed barn wood will give the brand-new coffee roasting HQ — set to open March 2018 — a distinct sense of history and place.

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Let's Get Metaphysical at H2Oasis

Whether you’re in need of a therapeutic massage or just spiritual development, the H2Oasis Conscious Lounge has everything you could want for the body, mind and spirit.

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4 things to do to this month at the Tulsa Botanic Garden

Stop and smell the roses with fun events and hands-on workshops.

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Top 4 Things To Do In Eufala This Summer

There's so much more to Eufaula than its namesake lake. Dive into a summer of fun and culture.

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Love and Laughs with Theatre Pops

July 14-16th, two plays, “Constellations” and “Every Brilliant Thing,” will look at two things we want most in life: love and purpose.

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