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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October 2019

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More information

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View map »


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Telephone: 580-317-8470
Contact Name: Emily
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More information

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Studio K (Tulsa) and Zarrow Studio (Broken Arrow(
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View map »


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Tulsa Historical Society and Museum
2445 S Peoria Ave
Tulsa, OK  74114
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Sponsor: Nimrod Journal
Telephone: 918-631-3080
Contact Name: Cassidy McCants
Website »

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Join us for Nimrod Write Night, the opening event of our Nimrod Conference for Readers and Writers weekend, on Friday, October 18th, at the Tulsa Historical Society, 6:30 p.m. Write Night is...

Cost: free

Where:
Tulsa Historical Society
2445 S. Peoria Ave.
Tulsa, OK  74114
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Sponsor: Nimrod Journal
Telephone: 918-631-3080
Contact Name: Cassidy McCants
Website »

More information

For the first time in 10 years, we will hear new music and get a new tour from three-time GRAMMY® Nominated, American Music Award and Dove Award winning recording artists Avalon. The group will...

Cost: $24.50-$75.00

Where:
Owasso First Assembly
9341 N. 129th E. Ave.
Owasso, OK  74055
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Sponsor: Compassion Live
Telephone: 877-234-3847
Contact Name: Carol
Website »

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Originally from West Africa, Kizomba is a partner dance that is a sexy addition to any Latin dance party. It is the fastest Latin growing dance in the U.S. Come and learn the basics plus a few more...

Cost: 109

Where:
THE DANCE PLACE
3310 WEST 42ND PLACE
TULSA, OK  74107
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Telephone: 918-813-6514
Website »

More information

Signature Symphony at TCC celebrates the work of the late Ernie Fields, a Tulsa icon who had a career as a bandleader and trombonist. Fields’ music developed at a time when R&B, swing,...

Cost: $36 - $58

Where:
VanTrease Performing Arts Center for Education
10300 E 81st St
Tulsa, OK  74133-4513
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Sponsor: Signature Symphony at TCC
Telephone: 918-595-7768
Contact Name: Tabitha Littlefield
Website »

More information

Signature Symphony at TCC celebrates the work of the late Ernie Fields, a Tulsa icon who had a career as a bandleader and trombonist. Fields’ music developed at a time when R&B, swing,...

Cost: $36 - $58

Where:
VanTrease Performing Arts Center for Education
10300 E 81st St
Tulsa, OK  74133-4513
View map »


Sponsor: Signature Symphony at TCC
Telephone: 918-595-7768
Contact Name: Tabitha Littlefield
Website »

More information

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The annual US National Arabian & Half Arabian Horse Show returns to Tulsa. You will be able to see over 1700 Arabian and Half Arabian horses competing in many divisions, including Breeding/In Hand...

Cost: 0.00

Where:
Tulsa State Fairgrounds
4145 E 21st St,
Tulsa, OK  74114
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Sponsor: Arabian Horse Association
Telephone: 303-6964500
Contact Name: Kelsey Berglund
Website »

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Nimrod Journal will host its annual Conference for Readers and Writers on Saturday, October 19th, at The University of Tulsa. The conference will feature workshops on fiction, poetry,...

Cost: $10-70

Where:
Allen Chapman Student Union
440 S Gary Ave
Tulsa, OK  74104
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Sponsor: Nimrod
Telephone: 918-631-3080
Contact Name: Cassidy McCants
Website »

More information

Nimrod International Journal of Prose and Poetry will host its annual Conference for Readers and Writers at The University of Tulsa on October 19th, 2019.   The Conference offers the...

Cost: $10-$70

Where:
TU's Allen Chapman Student Union
440 S. Gary Ave.
Tulsa, OK  74104
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Sponsor: Nimrod Journal
Telephone: 918-631-3080
Contact Name: Cassidy McCants
Website »

More information

Willkommen to four days of Oompah (or Bavaria or Oktoberfest) in Oklahoma  with nationally known German bands, authentic European foods, arts and  crafters MarktHaus, full carnival, and fun...

Cost: $10 at the gate or $7 in advance for adults. Children 12 and under are FREE.

Where:
River West Festival Park
2100 S. Jackson Ave.
Tulsa, OK  74107
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Sponsor: Resolute PR
Telephone: 903-292-7885
Contact Name: Zachary Johnston
Website »

More information

Hello, Friends!   Fall is in the air! We are excited to present the 5th Annual Hugo Pumpkin Festival, a fun-filled event featuring a variety of entertaining activities for the whole family....

Cost: $ 6 - $ 20

Where:
Endangered Ark Foundation
2657 E 2070 Rd
Hugo, OK  74743
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Sponsor: Endangered Ark Foundation
Telephone: 580-317-8470
Contact Name: Emily
Website »

More information

The Karbach Games and Competitions Arena becomes our own center of the universe Saturday at 2:00 PM for true fans of German bier. Why? Because it is ground zero for the Linde Oktoberfest Bavarian...

Cost: $40

Where:
River West Festival Park
2100 South Jackson Avenue
Tulsa, OK  74107
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Sponsor: River Parks
Contact Name: Ryan Howell

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Folk Salad Radio Show celebrates its 20th anniversary with a potluck meal followed by a concert featuring Grammy-nominated singer songwriter John Fullbright and several other Tulsa musicians on...

Cost: $35

Where:
The Stone Church
4225 W. Fifth St.
Tulsa, OK
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Sponsor: Folk Salad Radio Show
Website »

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Go into the woods and experience the return of this fantastic family production with performances in both Tulsa and Broken Arrow. Tulsa Ballet's Hardesty Family Foundation Children's...

Cost: $15

Where:
Studio K (Tulsa) and Zarrow Studio (Broken Arrow(
1212 E 45th Place
Tulsa, OK  74105
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Sponsor: Tulsa Ballet
Telephone: 918-749-6006
Contact Name: Dan
Website »

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Abersons presents Pink Ribbon -- an exclusive, high-fashion fundraiser featuring a runway show by one of the world's hottest designers. Cocktails 6 p.m. | Dinner & Live Auction 7...

Cost: $1,250

Where:
Southern Hills Country Club
2636 E. 61st St.
Tulsa, OK  74136
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Sponsor: Abersons
Telephone: 918-834-7200
Contact Name: Scarlet Henley
Website »

More information

America’s LARGEST interactive comedy murder mystery dinner show is now playing at the Hilton Garden Inn Tulsa Broken Arrow! At The Dinner Detective, you’ll tackle a challenging crime while you...

Cost: 59.95

Where:
Hilton Garden Inn Tulsa- Broken Arrow
420 W Albany St.
Broken Arrow, OK  74012
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Telephone: 866-496-0535
Contact Name: The Dinner Detective
Website »

More information

Join us for Nimrod Write Night, the opening event of our Nimrod Conference for Readers and Writers weekend, on Friday, October 18th, at the Tulsa Historical Society, 6:30 p.m. Write Night is...

Cost: free

Where:
Tulsa Historical Society
2445 S. Peoria Ave.
Tulsa, OK  74114
View map »


Sponsor: Nimrod Journal
Telephone: 918-631-3080
Contact Name: Cassidy McCants
Website »

More information

Originally from West Africa, Kizomba is a partner dance that is a sexy addition to any Latin dance party. It is the fastest Latin growing dance in the U.S. Come and learn the basics plus a few more...

Cost: 109

Where:
THE DANCE PLACE
3310 WEST 42ND PLACE
TULSA, OK  74107
View map »


Telephone: 918-813-6514
Website »

More information

Flashes of vivid colors, laughter, dancers whirling around keeping pace with the energetic music, more laughter……this is what you will experience at Guthrie Green this Saturday,...

Cost: Free

Where:
Guthrie Green
111 East M.B. Brady Street
Tulsa, OK  74103
View map »


Sponsor: SAPAF
Telephone: 918-665-6419
Contact Name: Mohan Kelkar
Website »

More information

Signature Symphony at TCC celebrates the work of the late Ernie Fields, a Tulsa icon who had a career as a bandleader and trombonist. Fields’ music developed at a time when R&B, swing,...

Cost: $36 - $58

Where:
VanTrease Performing Arts Center for Education
10300 E 81st St
Tulsa, OK  74133-4513
View map »


Sponsor: Signature Symphony at TCC
Telephone: 918-595-7768
Contact Name: Tabitha Littlefield
Website »

More information

Tulsa in Harmony is a congregation of community choirs, lending their voices in one accord. They sing of their hopes and their faith and aspirations of a more unified community and a more unified...

Cost: Free

Where:
Gathering Place
2650 S. John Williams Way E.
Tulsa, OK  74114
View map »


Website »

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Where:
ONEOK Field
201 N Elgin Ave
Tulsa, OK
View map »


Website »

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What's New


3.06: Representing District 73 - Regina Goodwin

A conversation with the state representative about issues in her district, plus what it's like being a Democrat in the state legislature. Plus Tulsa Architect Foundation's Amanda DeCort on the Blue Dome District and new music from Count Tutu.

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Oklahoma's Best-Sellers: Oct. 13

Based on total number of book sales at Magic City Books, Best of Books in Edmond, Brace Books and More in Ponca City, and Full Circle Bookstore in Oklahoma City.

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CLIFFDIVER on mental health, Tulsa and their new music

A Q&A with the Tulsa band that describes its sound as "Elevator Emo Pop"

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Oklahoma Best-Sellers: Oct. 6

Based on total number of book sales at Magic City Books, Best of Books in Edmond, Brace Books and More in Ponca City, and Full Circle Bookstore in Oklahoma City.

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Henna Roso on food insecurity and songwriting

Members of the Tulsa funk, jazz band discuss their new album and what drives them

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