CARYVILLE — Sonya Christenson loves to watch her son, Jesse, play with his monster trucks outside in the dirt. Now that Jesse is 33, life with her special needs son has presented the devoted mom with some big challenges.
“He’s a handful. He’s a big guy, and he’s very strong,” Christenson said. “I’m pretty much the only one that can control him.”
Jesse is childlike in most ways. He likes to color, make crafts, build with Legos and watch his favorite TV show, “The Dukes of Hazzard.”
“I’m Bo Duke in the General Lee,” Jesse said, strolling through the house. His mother had to translate what Jesse said with such enthusiasm.
Jesse was born healthy in South Dakota but showed signs of delayed development from the beginning. Christenson said her son didn’t sit up on his own until he was about 2 years old and didn’t take his first steps until after his 2nd birthday.
At the same age, Jesse caught pneumonia and spiked a fever so high it caused permanent brain damage.
Today, Jesse lives with a diagnosis of autism and other intellectual complications. Christenson describes her son as having the mind of an 8-year-old boy living in the body of a 33-year-old man.
Christenson accepts her life with Jesse and sees the silver lining in it. She knows she never will have to experience an empty nest.
“He’ll have to live with me for the rest of his life. He’ll never be able to live alone,” she said.
Jesse is a gentle giant. He loves to give hugs and talk about the projects he stays busy with in his room. He works three days a week with The Arc, an organization with a chapter in Washington County that advocates for the rights of people with intellectual and developmental disabilities. Jesse earns a tiny paycheck each month that his mother helps him spend on new crafts to make or to add to his impressive collection of toy trucks.
“I spoil him rotten,” Christenson said. “Who else would?”
Christenson said Jesse is content most of the time, but it can be challenging to live with him when he is destructive toward the environment around him.
Home damage: As a condition of Jesse’s autism, he has tantrums that — when combined with the strength of a grown man — literally have destroyed the inside of the 25-year-old single-wide mobile home Christenson struggles to keep habitable.
For instance, Christenson had replaced the windows in Jesse’s play room and bathroom four times and finally resorted to just stapling sheets of plastic to the windows.
“I put four sets of windows in his room and in his bathroom, because he keeps breaking them,” she said. “Now, he has four layers of plastic stapled to the wall to make his window because I’m tired of buying glass.”
Plastic-covered windows that do little to keep the elements out are only the beginning of the patching and modifications Christenson has done to keep the aging mobile home a functional residence.
Jesse’s personal domain in the home is a bedroom at one end of the trailer that he uses as a play room. In there, he sometimes entertains himself by picking at holes in the walls and ceiling.
Christenson pointed out numerous places in her home where Jesse had punched a hole in the drywall during a tantrum, then later pulled out the insulation and exposed the electrical wiring in the course of occupying himself.
“I’ve been in this home 16½ years, and it’s all bought and paid for,” Christenson said. “That man in there did it. Jesse paid for it all with his SSI.”
Jesse collects $721 a month in Supplemental Security Income (SSI), which his mother had used to pay off the mobile home they have lived in since 1996 and the 10.59 acres on which the land sits.
Christenson said the mobile home no longer can stand up to the destruction of daily life with Jesse. Evidence of endless repairs exist in every room.
A little help
Christenson was relieved when Tri-County Community Council replaced the walls in Jesse’s room with plywood paneling and put a new front and back door on her home, but it’s not enough.
Even with all of the modifications, the home is not an ideal place for someone with Jesse’s special needs. He is very sensitive to his environment and has frequent seizures. Christenson said the slightest shift in room temperature, sound or emotional extremes can trigger a seizure.
Christenson has a vision for the home she dreams of living in with her son one day — a home that will not trigger seizures and one that can stand up to the “Jesse experience.”
“I want my bedroom back,” Christenson said.
The single 52-year-old mother shares her bedroom with Jesse, who sleeps in a twin bed beside hers in case he seizes in the middle of the night.
“I would like us to have separate bedrooms with an adjoining door, like what’s in a hotel room,” she said.
Christenson said she simply wants a safe home for Jesse that will allow them the space they need to live comfortably, considering she can’t work and must stay home with her son around the clock.
“I have no life but him,” she said. “I give up my life to take care of him, because he’s not going in a group home.”
Christenson pulls in a little extra cash when she can by selling things she crochets, selling Avon and decorating cakes. But they get by primarily on Jesse’s monthly SSI check.
“This is my normal,” she said. “I just do it, because it comes natural to me. It comes natural to us.”
Christenson said she manages to pay the few monthly bills they have, but she’s in no financial position to construct the special home Jesse needs.
She hopes the GoFundMe account she opened online will help her make a stable home a reality.
“Sometimes we struggle,” she said. “But where there’s a will, there’s a way, and I will find a way to make this home.”
She said she can’t imagine her life without Jesse at the center of it.
“I don’t think either one of us would survive if we didn’t have each other,” she said.
Want to help?
- Donations can be made to help Sonya Christenson build a stable home for Jesse on the crowdfunding site GoFundMe.com at www.gofundme.com/f7dyc4.