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A WORLD APART: Trina Eaves with her autistic son Jeremy and daugher Jodesi (left to right).
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A WORLD APART: Trina Eaves with her autistic son Jeremy and daugher Jodesi (left to right).

'We were exhausted'

Autism | Desperate parents of autistic children are finding compassionate help through Christian respite care centers

Issue: "Divided we stand," Dec. 1, 2012

When Trina Eaves took her autistic son Jeremy to the mother’s day out program, he screamed and cried so much she had to pry him from the car. He trampled the other children on the playground as if he did not see them. His entire stay was one long meltdown.

The next time, Eaves stuck around to keep him calm—but eventually the center told her she’d have to take Jeremy elsewhere. Relatives could not handle him. Eaves and her husband Cecile tried other facilities in Mustang, where they lived 17 miles west of Oklahoma City. Finally, Eaves had to stop working at the daycare she ran for other kids.

Eaves is only one of hundreds of thousands of parents in the United States struggling to raise an autistic child with little rest or assistance. One in 88 children has been identified with an autism spectrum disorder according to the Centers for Disease Control and Prevention, but few facilities are trained to handle them. Eaves needed the support provided by respite care—and her story shows the need for more.

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Autism Spectrum Disorder (ASD) is a range of neurological disorders characterized by social impairments, communication disabilities, and repetitive patterns of behavior. The meltdowns and behavioral problems alerted Jeremy’s parents something was wrong before they received the dreaded diagnosis: autism, the most severe form of ASD. When Jeremy received his diagnosis at age 3, some doctors and therapists suggested he be institutionalized.

Jeremy’s behavioral issues made it nearly impossible for his parents to take him out in public. Many autistic children obsess over a certain object or concept, like trains or lines. For Jeremy, it was spoons, which he would fling across restaurants if he got his hands on them. He pulled hair, dropped to the floor, and threw fits on a regular basis.

Eaves found even simple things like taking Jeremy to the grocery store to be exhausting. The fluorescent lights in Walmart, for example, irritated him, and Eaves had to place a blanket over his head to keep him calm. Jeremy is hyporesponsive, which means he craves physical stimulus, and Eaves often needed to place a bag of dog food over the shopping cart he’s riding in to give him that pressure and keep him calm.

The struggles were equally intense at home. Jeremy tried to injure himself and his mother. He punched holes in the wall, poked holes in the furniture, and ate the carpet. The family could not even eat together at the dinner table. Jeremy could not eat regular food due to stomach issues, and would tear at others’ food and grab at their plates. Jeremy’s sister Jodesi, who is nine years older, would lock herself in her bedroom just to be able to eat.

Autism, Eaves said, makes you feel like you live in a different world: “You feel so isolated, from your family, from your friends, from the community, from just going to Walmart.” Some friends and family members accused them of poor parenting: “You just get a lot of doubt and go through all the grief, and blame, and [asking] why.”

Oregon resident Barbara Majors had a very similar experience when she and her husband Gary adopted their autistic son Daniel and another boy around the same time. They already had one biological son and an adopted, special-needs son.

Majors started looking for respite care when Daniel became out of control, violent, and aggressive on a regular basis. Majors said she and her husband had a strong marriage, so the struggle brought them closer together, but they were always on edge from the stress: “We were exhausted … our parenting was starting to suffer because we never got a break from Daniel’s aggression”—and another son became more aggressive to get his parents’ attention.

Because Daniel does not look autistic, Majors said, people outside the family often place unfair expectations on him to behave normally. Then, when he fails to meet those expectations, they back off, leaving the family isolated and without support. The isolation works both ways: “We really don’t have very many close friends because people just tend not to understand.” 

For Jeremy Eaves’ family, relief came a few months after Jeremy’s diagnosis. The program that diagnosed Jeremy, Sooner Start, recommended Hannah’s Promise, a respite care center run by United Methodist Church of the Servant in Oklahoma City.

When Eaves took Jeremy to Hannah’s Promise for the first time, he threw a fit. Eaves was hesitant to leave him, afraid it would not work out—again. She had not scheduled anything for that night, sure she would have to retrieve Jeremy before the evening was over. But 9:00 came, and the phone call did not.

—Rachel Aldrich is a WORLD intern at Patrick Henry College

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