Soul of fire

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.

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.

“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.”