Soul of fire

Jessi Upton can paint fantastic pictures but can’t feed herself or say, “Mama.” Jessi Upton has autism.

By D. Brian Burghart
brianb@newsreview.com
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This article was published on 11.27.08.

Jessi watches her father very intently as he spells out letters. PHOTO BY LAUREN RANDOLPH

The pretty, little 5-year-old girl furrows her brow and reaches her tongue out to touch the blotch of color on her hand. She rubs the paint between her palms, squishes it through her fingers like a melting rainbow and begins to touch the canvas that lays flat before her. Her father, Todd Upton (a RN&R contributing photographer), squeezes a bit more paint on the canvas, while her mother, Laura, sits to the side, telling the heartrending story of a daughter who, to the casual observer, looks like a perfectly normal, perfectly happy, little blond girl—just like millions of others you might see running around the kindergarten play area or making a mess of things at Chuck E. Cheese’s.

That’s not the case, though. Jessi is a special little girl. A little deeper look into her eyes reveals that the intelligence that looks back is somehow … peculiar. Even when she makes demands, for example, asking a stranger to make a letter in the paint, an “esssa” or “teeee” or “dubbadubbayew,” that glint of connection, of being-to-being interaction, just isn’t there. But there’s something there, and if her eyes are the portal to her soul, the soul is a deep, feral and iridescent place.

Jessi Upton is, to a degree, a famous painter. She recently donated and hung some of her paintings at the Lili Claire Foundation Family Resource Center at Renown Regional Medical Center. It may be that she’ll never log onto her e-mail account or use a potty, but she can make paintings with an instinctual sense and use of color and composition—kind of spooky really.

One of Jessi’s finished paintings. PHOTO BY LAUREN RANDOLPH

But there’s little about autism that isn’t spooky. According to the Centers for Disease Control and Prevention, an autistic child is born in one out of 150 births. It’s the fastest-growing developmental disability. It’s a “complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills,” according to the Autism Society of America.

The scariest thing is that nobody really knows what causes it or how to cure it. It appears to have some genetic component, but how this interacts with environmental factors—there has been a lot of speculation about vaccinations—is unknown. One thing that is known is that the cost of lifelong care can be reduced by two-thirds with early diagnosis and intervention. The problem with this is, diagnosis can be difficult since autism is as individual as the person who has it, and stereotyped symptoms—flapping hands, tantrums, lack of social interaction, lack of eye contact—can be entirely absent.

But even with early diagnosis, autism is a financial black hole. The Uptons spend upwards of $30,000 a year on therapy and other associated costs, with the threat of another $18,000 a year because of government budget cuts.

I follow Jessi upstairs into her bedroom. She shows me around a bit, but then delicately pushes me out and says “bye bye.” I leave the room as she timidly closes the door, repeating “bye bye.” PHOTO BY LAUREN RANDOLPH

“The thing that’s heart-wrenching for us,” says Laura, “is we’ve put our whole life savings and mortgaged the house to the hilt.” And while their business, Upton Services, Heating and Air Conditioning, would provide a great lifestyle for most families, it’s barely enough with an autistic child in the home. (The Uptons have another son, Jake, 3, who does not suffer with the disease.)

So it’s a blessing that Jessi paints, even though the website, www.soulartbyjess.com, hasn’t exactly resulted in a financial windfall. But the Uptons don’t resent the drain, and they attribute their daughter’s amazing progress to the ministrations of people like Jessi’s three behavioral therapists, speech therapist and two occupational therapists. Wayne Maloney of Sarah Winnemucca’s Reverse Strategies program also has a special place in their hearts.

In the meantime, Todd and Laura look with pride at their daughter as she traces over a “14” a stranger made on her canvas. For an autistic child, she has high skills, recognizing several hundred written words and recognizing such concepts as “more"—more food, more paint, more “zshel-low.”

“You just worry who’s going to take care of her when we’re gone,” says Laura. “It’s neat for other families that she has painting. … For the most part, she’s really, really happy. She can say all the Sesame Street characters, but I’d trade it all in if she just knew what I was saying.”

And if she would just say, “Mama.”

Jessi starts to throw a small tantrum, and neither parent knows what she wants. Todd asks her in American Sign Language if she wants “more.” PHOTO BY LAUREN RANDOLPH

 

 

 

 

 

 

 

 

 

 

Jessi is learning by using different sensory objects and toys. Here her therapist, Judy Ishibashi, shows her how to make a handprint.

PHOTO BY LAUREN RANDOLPH

Laura reads to her daughter, Jessi. The book is her Sesame Street book, one she carries around almost the whole day. PHOTO BY LAUREN RANDOLPH

 

 

 

 

 

 

 

 

 

 

 

 

Jessi writes words like “apple” and, with the help of her father, spells “elephant.” PHOTO BY LAUREN RANDOLPH

 

 

 

 

I ask Jessi if I can come under the sheet with her. She agrees and giggles after I poke my head underneath—still with her book in her hand. PHOTO BY LAUREN RANDOLPH

 

 

 

 

 

 

 

 

 

 

 

 

Jessi feeds herself, something Laura says doesn’t happen too often. Yogurt spills all over as she eats. PHOTO BY LAUREN RANDOLPH

 

Jessi Upton is a gifted little girl with pretty, light blonde hair, innocent eyes and a beautiful smile. Her face lights up when she's watching Bert from Sesame Street and focuses intently when she's drawing or painting on a canvas.

For a brief moment, it's very easy to forget that 5-year-old Jessi is autistic. But her parents, Todd and Laura Upton, are still learning to build their lives around her disability, regardless of the heartache and struggles they’ve already been through.

In spite of being autistic, Jessi has found a niche in painting and she is donating some of her artwork to a new foundation coming to northern Nevada called the Lili Claire Foundation. The Uptons of northwest Reno also hope to find new support services to help their daughter and other children in the community.

On Tuesday, the Lili Claire Foundation's fourth family resource center will celebrate its grand opening at Renown Regional Medical Center, partnering with the University of Nevada School of Medicine in Las Vegas, University of California, Los Angeles, and Meharry Medical College in Nashville, Tenn.

The program is named after Lili Claire Resnick, an infant born in October 1997 and who was quickly diagnosed with Williams Syndrome, which came from a neurogenetic birth defect that would present physical and cognitive challenges. Lili Claire never made it, as she died at almost 6 months old after an extensive open-heart surgery in an effort to repair a heart condition common to Williams Syndrome. Her parents, the Resnicks, established the foundation to help children and their families through medical and social services to lead more productive lives.

Lynda Tache, executive director for Nevada for the Lili Claire Foundation, said the main goal of the resource center will be to help diagnose children with neurodevelopment disabilities, such as Williams and Down syndromes and autism early in their lives.

"We partnered with Renown because they saw the need," Tache said. "There's a huge need up here to properly diagnose to get early on an intervention plan. Parents need the support on how to work with their children and actually advocate for them."

The foundation's services are free of charge to the families, paid through private donations and grants. A staff of pediatricians and neuropsychologists will be available to help parents and children.

Tache said the center will be a huge relief to parents because most insurance plans don't usually cover neurogenetic disabilities, which can range from $3,000 to $5,000 just for diagnosis.

The foundation will provide aid to the Uptons, who said they could pay up to $40,000 a year in therapy and other expenses for Jessi for the rest of her life.

Testing for autism is extremely difficult, Laura said, and it was "devastating" when they found out.

"At 12 months, I started to suspect something was wrong, but she was our first child and we didn't have anything or anyone to compare her to," Laura said, "and you start getting these little nagging fears in your heart. And you push them away because she was this beautiful, beautiful baby. Perfect. And she was never sick."

Jessi showed signs as an infant that the Uptons didn't know how to interpret. She showed no eye contact in her first three months, didn't learn how to crawl until after 18 months and didn't learn how to speak. Even now at 5, Jessi is two years behind in a child's developmental process and can articulate about 20 words. Most of the time she signs what she wants to her mother.

Such fine motor skills and communications challenges are the sort of issues the foundation wants to address, Tache said.

"We offer support services, such as helping parents cope with what's going on with the child, teaching them how to work with their child, provide social skills groups," Tache said.

She said the organization will also network with other groups to refer parents if they have a need that Lili Claire Foundation cannot provide.

Tache, who is a single mother of a 7-year-old autistic son herself, said she recognizes the need in northern Nevada to provide support and advocacy for these disabilities to help family members better interact with their children.

But Jessi has a gift. Since Christmas of 2007, she's been able to create colorful art with her hands and can paint on a table or in a bathtub with Laura. Todd said this is unusual because people with autism typically do not enjoy sensory things, such as feeling grass underneath their feet. But with canvasses, paint, glitter and decorative jewels, she uses her hands and creates expressive works that some people purchase on a Web site the Uptons set up for Jessi, called "Soul Art by Jess." It's been a sort of therapy that's helped Jessi and Laura.

"We definitely don't say the paintings caused her to open up verbally, but we've definitely seen a huge growth spurt," Todd said.

Todd said he looks forward to taking advantage of what the foundation will be able to do for his daughter.

"This resource center sounds like it's just going to be amazing because ... we were lucky enough to know people who had Down syndrome who said this therapist is great and this therapist is great, and it's amazing to find out how hard it is to get information," Todd said. "There's a waiting list to get (Sierra Regional Center) funding."

"And you have to wait to get on Medicaid," Laura said of the many processes the couple had to go through to get a proper diagnosis, then get speech, behavioral and occupational therapy for their daughter. "You have to go get denied for Social Security first.

"I wish we would have had a resource like this (foundation)," Laura said. "It would have been wonderful."

It's for people like the Uptons that Lili Claire exists, Tache said.

"The majority of what our children go through are behavioral and social (mannerisms)...and if you don't know, people think the child is spoiled or a brat, but it's something they can't help," Tache said. "It's just lack of awareness."

The Lili Claire Foundation will host a fundraiser dinner and concert on Nov. 8 at the Silver Legacy Resort and Casino featuring Five for Fighting and Stephen Bishop. All proceeds will benefit the foundation.

For more information on Jessi and her art, visit www.soulartbyjess.com.

Girl's artwork to be showcased
BY CARLA ROCCAPRIORE • CROCCAPRIORE@RGJ.COM • SEPTEMBER 22, 2008
 
A little girl's artwork will hang on the walls of a new facility that opens this week at Renown Regional Medical Center.Three paintings by 5-year-old Jessi Upton, an autistic child who lives in Reno, will grace the Lili Claire Foundation Family Resource Center, designed to assist families with special-needs children.

The center is on the Sierra Tower's ground floor at Renown, 1155 Mill St. A grand opening is scheduled from 5:30 to 7 p.m. Tuesday.

The resource center will provide education and supportive services to the community about neurogenetic conditions that include Williams syndrome, autism and Down syndrome.

Laura Upton, Jessi's mother, said Jessi has made strides since she began painting almost a year ago with encouragement from occupational therapists.

"Autistic kids sometimes get agitated, and that goes away when she's painting," Laura Upton said. "She focuses for a long period when painting. It's not something someone forces her to do."

Stremmel Gallery owner Turkey Stremmel recommended Jessi's art for Renown's new facility and framed the pieces.

Stremmel said she saw pictures of Jessi's work online and contacted her parents.

"She has a real, natural ability and she's really good with her colors," Stremmel said. "Her movement is nice and her colors are great. She loves colors and it shows.

"She's got a God-given talent."

It's unlikely that Jessi will miss the pieces she did when they're hanging in Renown, her mother said.

"She enjoys the process of painting," Laura Upton said, "but once she's done, she doesn't seem to notice them anymore. I'm much more sad than she is, (about donating the paintings), because I can get attached."

To see more examples of Jessi's art, visit www.soulartbyjess.com and for more information on the grand opening, call 982-5595.