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Living with PURPOSE: A program for adults with special needs

KRUGERVILLE — Amy Gayhart taps the jar of pickles Ryan carefully holds with both hands. The 19-year-old shuffles his feet as she gives him a sunny smile of encouragement. It’s one that seems to be her default expression, especially when she enters teaching mode. But for all her cheerfulness, there is determination in the set of her shoulders.

Her current goal?

Getting Ryan to explain with as little assistance as possible the production of the pickles sold at PURPOSE Mercantile, a shop on the grounds of Blue Sky Therapeutic Riding & Respite. They stand in the center of the spherical store, which was a functioning grain silo before its transformation. Now its walls are lined with numerous specialty items, from bars of soap to greeting cards. Behind them hangs a black chalkboard, which borrows from Dolly Parton’s wisdom, saying “Find Out Who You Are and Do It on Purpose.” The PURPOSE Mercantile, which is stocked and staffed by adults with special needs, has many things to offer — including pickles.

Amy starts things off with a prompt.

“What do we grow in the garden to make these? What vegetable do we use?” She hesitates. “Cu—”

That’s all Ryan needs.

“Cucumber!” He rises on his toes in victory.

Amy’s smile widens as she matches his enthusiasm, and she pushes a few stray blond hairs out of her face. “So we grow them and then we what?”

Ryan considers. “Pick them?”

“Yes, we pick them and then we …”

Ryan looks unsure. “Wash them?”

Amy quickly affirms him and continues the back and forth. There are many pauses as she gives hints sparingly.

“And add the magic sauce …?” Amy asks.

“Add the magic sauce!” Ryan agrees, wiggling the glass jar for emphasis.

They decide that’s enough on the pickles. Amy gives a playful smile — they can’t talk about the magic sauce’s ingredients. “It’s a secret recipe!” Ryan grins.

Success.

Moments like these remind Amy, Blue Sky’s executive director, of why she created the PURPOSE (Providing Unique and Realistic Possibilities and Opportunities for Our Special needs Equestrians) program for adults with special needs. Her vision for the nonprofit organization, which sits on 8 acres in Krugerville, extends far beyond Blue Sky’s original mission to provide therapeutic horseback riding for those with disabilities. Through her years of involvement with the special needs community, she has found these adults are chronically underserved after they graduate from public school programs because the need for care outpaces program availability.

“There aren’t options,” Amy explains, then hesitates. “Well, there are, but they’re expensive.”

But PURPOSE is about breaking barriers. No behaviors are considered too extreme at the program — they balance the number of clients, staff and volunteers to ensure every client has the attention needed to handle the challenges they face. It is also affordable, never costing more than $25 per day. The goal is to create access for those who most need it.

Amy’s motivation comes from a personal place. Her 19-year-old daughter, Mabry, has a genetic disorder called SYNGAP1, the main characteristics of which are autism, developmental delays, high pain tolerance and seizures. Amy says every step she has taken with PURPOSE has been driven by her love for her daughter and empathy for those who face the same challenges.

From Amy’s perspective, a program’s value is more than its accessibility. She wants clients to spend their time at PURPOSE enhancing their creativity, building their work ethic and fostering friendships, both inside and outside the classroom. PURPOSE provides life training, from gardening and cooking to working through disagreements with friends to interacting with strangers. The overarching goal is helping them reach their highest level of independence.

“We were all born to do two things,” Amy explains. “Live in a community and have a job. In order to do those two things, you have to have independence. So what that looks like for one may not look like that for the other. But you push past what you think your limits are. And that’s where the magic is.”

Why PURPOSE?

Amy knew she and her husband needed a plan after they were snowed in for a week when Mabry was 12 years old.

“[Mabry] was standing by the front door, looking,” says Amy, sinking into the memory. “She was just sitting there crying and having a fit because the school bus wasn’t there. I was like, there is going to come a day when the school bus isn’t there. And what do we do then?”

It wasn’t the first time she had questioned Mabry’s future, or her own. When her daughter, a seemingly healthy, happy baby, never began talking, it spun their family toward challenges they never imagined.

“That’s when I quit my job and became a full-time mama,” Amy says. It was difficult; she had just begun to use her degree in art communications when she cut her career short. Soon two more children, Jack and then Slater, joined the family. As a busy mother of three, with one child needing extensive care, the days could be grueling, especially because her husband, John, often had to travel for work.

“It was a lot of stuff to carry,” Amy says. “I think back, and I wonder how in the world did I make it through that time.”

Amy also harbored resentment about the couple’s different responses to learning that Mabry had special needs. At the time, she says she felt John grieved too quickly and believed it meant he didn’t love their daughter as much as she did.

“I think when couples realize that the grieving processes are so different and that they don’t happen at the same time, that’s a big, big factor,” she says.

It wasn’t until 2012 when she joined the board of directors at Blue Sky, where Mabry participated in its riding program, that Amy’s perspective began to change.

“I think I was looking for that healing, and being with likeminded people helped tremendously,” Amy says. “And then, when we started moving in to doing the PURPOSE program, I loved it so much … [I] was finding my purpose at the same time I was trying to help these guys find theirs.”

Working through her past struggles has allowed Amy to provide support for others who are on the same path. She uses social media to be transparent about the impact Mabry’s special needs have on their everyday life, which has spurred many conversations with parents who are wrestling with the same questions Amy faced. She and John also created a podcast called Totally Worth It, which centers around the joys and challenges of families who care for special-needs adults.

“This is the hand we’ve been dealt — let’s play it,” Amy remembers deciding. “Let’s do the very best with it that we can. And along the way, let’s help some other people who may have been in that same situation that we were.”

Much of that has been accomplished through her work at Blue Sky. In 2014, Amy began leading several craft projects for a group of clients on “Fun Fridays,” which was a time for them to enjoy hanging out with their peers outside of riding lessons. Blue Sky used their creations to hold a fundraiser, which had a fantastic response.

“We realized that we might have something here,” Amy says. “Our clients would sell something [for the fundraiser] and get so excited, and I was like, ‘That’s it. That’s the goal right there.’”

Amy worked with Blue Sky founder Julie Coady to hone the vision for PURPOSE and polled parents on what they wanted in a day program. She also worked with other volunteers to build the PURPOSE Mercantile brand by selling the products clients made on Fun Fridays at farmers markets and craft fairs.

In 2018, she was hired as the executive director at Blue Sky, and in April 2019, the PURPOSE program officially kicked off. Currently, 12 clients per day attend the four-hour-long classes Tuesday-Thursday, while Fun Fridays are open for all special-needs adults, with as many as 20 attending. The PURPOSE Mercantile is open for business two Saturdays a month and by appointment during PURPOSE days, with the clients earning a paycheck for their efforts.

Ryan’s mom, Kim Groff, who is on Blue Sky’s board, says Ryan was ecstatic when he got his first paycheck. “[Amy] handed him the envelope, and he went into the biggest paycheck dance that you’ve ever seen,” Kim remembers. “It was like running around, running through the yard, hands over the head.”

Both PURPOSE and the riding therapy program are run by three staff members, meaning volunteers play a big role at Blue Sky.

“We don’t have a lot of salary involved,” Amy says. “It’s volunteer-based. They’re the heart.”

Amy sees only growth as she looks toward the future. Her next goal is to expand PURPOSE to include Mondays in early 2022. Blue Sky is also applying for a grant that would allow it to build a sensory room to help clients wind down from anxiety-triggered meltdowns without having to go home. Amy sees it as just one more step toward making space in the world for those with special needs.

As for long-term goals? Amy envisions extending PURPOSE’s reach to provide safe, affordable housing for adults with special needs. Though there are numerous hurdles to overcome before making that expansion, the key is a commitment to taking small but focused steps. “We are growing forward but growing forward calculated,” Amy explains.

Casey Southard, a volunteer and mother of a longtime PURPOSE client, says Amy’s approach makes PURPOSE successful. “I personally don’t think that it could run without Amy. Just because of her energy, her passion, her love for every client there and their families.”

It is the same passion she has poured into her daughter. Right now, Mabry is transitioning out of the special education program at Prosper ISD, but she will eventually become a client of the PURPOSE program. In the meantime, Blue Sky has already become like a second home for her. Amy’s face lights up as she talks about the empowerment Mabry, who is still nonverbal, finds there. “It’s fantastic, and my daughter loves it.”

‘A special place for us to come’

It is the end of the day at PURPOSE. The last of the soap bars are being wrapped up in tiny burlap bags, the last pictures colored. A lively chatter fills the room as everyone waits for the parents and guardians to arrive. Noah and Erin discuss the merits of Toy Story’s Woody the Cowboy and Jessie the Cowgirl. Dustin is reminded that he can say how people are acting but to not call them names. Paige sits curled into the corner of one of the big tan sofas, Amy by her side. They’ve been bantering back and forth about Amy having to leave early the previous week, but there is a shift when Paige considers what PURPOSE means to her.

“I graduated from high school, and high school was really tough on me,” Paige says. “I like it here because I got to meet all of my new friends. … For several years we’ve come to ‘dayhab.’ It’s so easy for me to know who we are and get to know each other, and then you get to have a lot of fun.”

She tells of the friends who also went to Pilot Point ISD who come to PURPOSE. She tells how her dad helped build the PURPOSE barn into the large, comfortable room it is today, where clients can make their creations, where there is a kitchen to cook in and the cozy couches to sit on.

“It’s a special place for us to come.”

Their tight-knit group keeps in touch even when classes are done for the day. “We text, FaceTime, all of that,” Amy says. “So it’s true friendships, you know? Really true friendships. And we do life together.”


Denton
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Improvements happening at Denton roads where deadly crashes happened

Improvements are underway on two major roadways where the number of cars on the road — and fatalities — are higher.

Last year, 20 people died in fatal crashes in Denton. That’s the highest number in the past 10 years, according to the Texas Department of Transportation. In 2020, 14 people were killed in crashes in Denton; in 2019, 16 people died.

Fatal crashes happened in different parts of Denton in 2021, and a few happened on some of the most traveled roads. While road composition is one factor in a crash, conditions of the road also can play a role in crashes. Some roads in Denton are getting improvements to address safety concerns.

“There’s no distinct trends in the causal factors across the crashes,” Sgt. Bryan Cose of the Denton Police Department said. “Some involved pedestrians; some involved motorcyclists. Probably the primary one was speed or failure to control speed, or driving too fast for road conditions at the time.”

Cose said there weren’t any geographical trends in where the crashes happened. The ones on University Drive, for example, were dispersed between the east and west sides.

U.S. Highway 380 is a 673-mile road that travels through Texas. Known as University Drive through Denton, U.S. 380 was the site of three deadly crashes in Denton last year. One of those collisions, near Rockhill Road in east Denton, killed three people — two of them young children — and devastated the victims’ families.

Some relief could come to motorists driving through Denton on U.S. 380, but the big-picture plan won’t be completed until at least 2025.

“The purpose of the project is to improve mobility by increasing capacity and reducing traffic congestion,” said Kendall Sloan, a spokesperson for the Texas Department of Transportation. “The project will widen and increase the number of travel lanes, add grade separations at five busy intersections and bring the roadway up to current safety design standards.”

She said work on this project will start this month and also will make the corridor more pedestrian-friendly.

U.S. 380 also intersects with Interstate 35 in Denton. That area, particularly the northbound lanes near the exit and entrance ramps, has been the site of many crashes over the years, including one in 2020 when a teenager was trapped in a car crushed by a semi-trailer. That teen suffered only minor injuries.

A TxDOT report in December said work at that intersection should wrap in February. The I-35 entrance ramp is now closer to the U.S. 380 intersection, and the exit is farther south to give drivers more space on the frontage road.

The upgrades at this intersection were a direct result of residents bringing up their concerns to the Denton City Council.

Sloan said another project on U.S. 380 — between South Loop 288 in Denton to U.S. Highway 377 in Cross Roads — is also to bring the road up to new safety standards, including becoming more pedestrian-friendly.

While some road projects in Denton are handled by TxDOT, others are handled by the city’s engineers.

“Hickory Creek Road Phase 3 and the U.S. 380 interim improvements are two projects that are results of citizen safety concerns,” said Stuart Birdseye, a spokesperson for the city of Denton. “Many of the projects Capital Projects/Engineering currently are delivering have safety elements within them including improving sidewalks, providing bicycle lanes, adding signs, markings and signals as needed, or even widening roadways.”

There weren’t any deadly crashes on Hickory Creek Road last year, but the deaths of two teenage brothers in 2019 sparked the numerous improvements to the stretch of road. The first phase of construction widened the road from Barrel Strap Road to Teasley Lane, and the second phase continued that work and added storm drains and a sidewalk between Teasley and Riverpass Drive.

The current third phase, expected to be finished around June 2024, will replace the winding section of Hickory Creek Road near Country Club Road with a four-lane bridge. The straight bridge will bring the road out of the floodplain and eliminate the dangerous curves along the road.

Birdseye said residents’ safety concerns have also sparked improvements to East McKinney Street, where new sidewalks will be added.


Motorists drive Thursday on U.S. Highway 380 near Rockhill Road, the site of a crash that killed three people in two vehicles last year. Seventeen fatal crashes happened in Denton in 2021, some of them on the city’s most traveled roads, including U.S. 380.


Denton
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Sorry, not sorry: Local poet publishes a book about his life with a disability (with no apologies)

Denton resident and writer Val Vera isn’t here to be anyone’s inspiration.

Born with muscular dystrophy, a group of diseases that cause progressive muscle loss and physical weakness, Vera has made a life that is both unremarkable but defiant. He’s a father, a boyfriend and an everyman. But it is those very things that make his life remarkable, too, he says. Because a lot of people think that kind of life eludes a man who uses a wheelchair.

He knows some people expect him to be a one-dimensional avatar of overcoming and triumph.

“No thanks,” Vera said.

Vera recently published his first book through POOR Press. Crip Lyrics: The Unapologetic Poetry of Disability collects Vera’s poetry, coupled with illustrations by Melissa Marie Eckardt, who also has a disability. The poems reflect on Vera’s life and experiences, and they plumb the depths of his difference. By the end, though, the work synthesizes the uncommon experiences Vera has had as a “crip,” and the universal experiences of craving acceptance and love — though from where Vera sits, the costs are bigger.

The book is confrontational, a choice that starts with the title.

“A lot of people in the disability community don’t like the word and won’t use it,” Vera said of the word “crip,” a shortened version of the word “cripple.” Vera said a lot of people with disabilities consider the word a slur, a label that shrinks a person with a disability down to what they lack.

“I’ve reclaimed the word,” Vera said.

Vera was born and raised in California to Puerto Rican parents. The family discovered his muscular dystrophy just before he turned a year old. His late sister also had muscular dystrophy. His was a religious household. His father died from cancer when Vera was a teenager, and Vera enrolled in college and studied radio, television and film. An aspiring filmmaker, Vera said he wanted to learn how to write and shoot film.

“Education became a priority for me,” he said. “I started taking school seriously after my father died. I wanted to show that there wasn’t a black cloud over me.”

He got a job working at a center for people with disabilities, a position that led him to legal advocacy.

“I was raised to not think of myself as being any different than anyone else, and didn’t think of myself as having a disability,” Vera said. “I didn’t have any disabled friends. I was the only one, but I wasn’t taught to think about myself through the lens of a disability.”

Advocacy widened his circle of friends and associates, and it was his own experiences and advocacy that showed him that disability is an intersection of identity and culture.

“It is a culture,” he said. “We have our artists, our performers, our activists. Anyone who has a disability understands oppression. Anyone with a disability knows what it’s like for people to only want to look at you as an inspiration, as someone who has overcome obstacles. Anyone who has a disability knows what it is like to have people look at you as someone who can make them feel better about themselves.”

Vera said poetry appeals to him because there are no right or wrong poems. Poetry means shedding the extraneous and getting to the heart of matters — good or bad, glowing or ugly.

“I think this poetry reflects who and where I am,” he said. “I’m telling a story in 500 words or less, and when you don’t use too many words, the words have more meaning, almost. I enjoy writing poetry, and when you think about disabled poetry, there aren’t many disabled poets. There’s Andrea Gibson, a poet who had chronic Lyme disease, but there aren’t a lot of poets who are known for living with a disability.”

Vera’s collection muses over his body, a body that is brown and disabled. He accepts his body as an object of fear and scorn, but also as a place where he experiences connection, pleasure.

“I don’t back away from having a sexual body,” Vera said, broaching a subject that has discomfited ableists who prefer to consider people with disabilities as cut off from sex and intimacy.

In “Worthy,” Vera imagines everything behind averted eyes and enlists memories of tactless things said to and about him.

Worthy, we are./Yet, segregated,/isolated/from society’s circles./Their words,/actions./Silence smothers the scarred hurtful.

In “This Body,” Vera extends an invitation to reflect on seduction and yearning. It frames intimacy as a near-religious encounter, an abrupt contradiction to the literal religious treatment in “Healed.” In that poem, Vera condemns the way religious hucksters use disability as a stepping stone in the road to so-called wholeness. It’s also a stinging reminder of faith healers indicting people who can’t walk away from a wheelchair to a chorus of hallelujahs of having too little belief.

Eckardt’s illustrations are alternately moody and reminiscent of graphic novels and comic books. Vera said he found her illustrations absorbing reflections on his poetry. (He was fascinated with her illustration for the poem “Walls,” which gives voice to regret, isolation and loneliness. The illustration depicts a scarlet rotary phone on a bed. “She asked me, ‘Where do you do most of your writing?’ In bed. She was right.”)

Vera said he found POOR Press to be a good fit. The Oakland, California-based publisher is dedicated to publishing work by poor, indigenous and marginalized writers.

“I like that they especially give voice to poor writers,” Vera said.

He found the publisher through associates at Deep Vellum, an independent publisher and bookstore in Dallas that gathered several writers to have video meetings and editing sessions throughout the pandemic.

“It was a really good experience,” Vera said.

Crip Lyrics is available at POOR Press for $10, with copies also available through Recycled Books and Vera through his Twitter, Instagram and Facebook pages.


Ryan, 19, who participates in the PURPOSE (Providing Unique and Realistic Possibilities and Opportunities for Our Special needs Equestrians) program for adults with special needs, holds a jar of pickles in the PURPOSE Mercantile.


Denton resident Val Vera, who is a disability advocate, has a book of illustrations and poetry coming out titled “Crip Lyrics.”


Commissioners
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Big shoes to fill: Meet Denton County’s new fire marshal

Brad Sebastian started at Denton County Emergency Services in 2015, working his way up the ranks until he was sworn in this week as fire marshal — a role that comes with big shoes to fill after Roland Asebedo’s death last September.

Sebastian was born in Gainesville but moved to Krum as a fifth grader, where he says he’s practically lived ever since. His career started off working for aerospace company Boeing, though a friendship with the chief of Krum’s volunteer fire department ended up steering him in a different direction.

“As a child, we lived by the fire station, and I could always see those guys go out on calls,” Sebastian said. “As a young man growing up, you’re like, ‘Wow, that’s kind of cool.’ I always had that in the back of my mind.”

Sebastian’s now-20-plus years of experience in the emergency services field started then, as a volunteer firefighter. Eventually, the city of Krum was ready for its firefighters to go full-time, and he ended up leaving his job to take up that opportunity. He spent years at the city, studying to become a fire investigator and fire inspector.

Sebastian also graduated from police academy, starting in 2010 as a reserve police officer for Krum while continuing his work as a firefighter. He said he enjoyed the comradery and brotherhood of the fire station, but also was intrigued by the work of the county fire marshals.

“Some of the fire marshals from Denton County would come out to our fires and our station,” Sebastian said. “I thought that’s a really neat part of the job because they still get to be involved.”

Using his police and firefighter experience, Sebastian landed a deputy fire marshal job at the county in 2015. He has worked his way up since — promoted to senior deputy fire marshal and then to assistant fire marshal. The head fire marshal position had been held by Jody Gonzalez before Roland Asebedo was appointed to the role in October 2020.

Courtesy photo 

Roland Asebedo

Last September, Asebedo died of complications from COVID-19, creating a sudden void in the county’s emergency management hierarchy. The emotional toll was felt far beyond just his work, with hundreds of people from several agencies across the county showing up to say goodbye at his funeral.

“The passing of someone like Roland, for us, was a shock,” Sebastian said. “That was something that nobody’s set to go through. … It’s something every day that we think about.”

The fire marshal has several responsibilities, including meeting with contractors, developers and local fire chiefs, as well as making sure the county’s complying with state government code. Sebastian said he’s been doing much of that work since Asebedo’s death, and that the transition wasn’t too difficult because he worked so closely with him already.

At his swearing-in ceremony at the year’s first County Commissioners Court meeting, Sebastian thanked both Asebedo and Deputy County Administrator Jody Gonzalez for their mentorship. He said he always believed he could make it to fire marshal, but that he hates it happened the way it did. Still, there are several lessons he’s hoping to move forward with.

“With Roland, the biggest thing I learned from him is the kindness,” Sebastian said. “How he treated people was very visible. The care he would have for everybody. … everybody’s emergency is different and everybody’s need is different.”

Sebastian said he’s hoping to advance the county’s ability to work with municipalities and best deliver emergency services to its unincorporated residents, of which there are well over 100,000. But in general, he won’t “look to be making big changes.”

“I think I’m very much like [Roland],” Sebastian said. “I’m personal, I love people. … I’m very grateful for the mentorship from Roland and Jody. I would not have been standing there taking the oath had it not been for both of them.”


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