'We were exhausted'

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.

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.

“I remember my daughter saying with tears in her eyes that he did really well, she couldn’t even believe it,” Eaves said. Jeremy is now 12 and is still attending Hannah’s Promise. In nine years, Eaves has had to retrieve Jeremy early only three times.

Hannah’s Promise, like most respite care centers, pairs each child with a volunteer. Eaves worried about leaving Jeremy with the first volunteer, an older woman, but she kept saying it would be okay. Jeremy, in Eaves’ words, fell in love with her: “Where most people are scared of this 3-year-old kid, she embraced him, and he felt that.”

Since Jeremy first started attending Hannah’s Promise, his family has seen significant improvement. Jeremy has been able to live a high-functioning life, even though he does not have high-functioning autism. He still has limited verbal skills, but is now able to interact with other kids. The Eaves occasionally leave him with other babysitters. He has become able to operate and learn in a regular classroom setting. Jeremy’s sister, Jodesi, volunteered at Hannah’s Promise from age 12 to 17. She is in the Navy now, and when she comes home, they are able to go do things together because they can leave Jeremy with other people.

Carissa Rainey is the current director of Pumpkin Patch Kidz, a respite care center in Enid, Okla., that imitated the structure of Hannah’s Promise. Her son, Brett, has Asperger’s syndrome, a high-functioning form of ASD where the child may not look like anything is wrong but struggles with many of the same social difficulties. Brett does not understand subtle social cues, sarcasm, or jokes, so he often annoys other children.

Rainey put Brett in Cub Scouts for a year, but it was a poor fit. Rainey said structured activities are especially hard for him. She said he often told her, “Mom, I just want to go home.” When it was time to sit down for announcements, or do a group activity, he would often stand up and leave. Other times, he would throw a fit. One Asperger’s difficulty is that the typical signs of disability are not apparent: Another parent sitting at a Cub Scouts meeting would probably not realize Brett had ASD.

The first night Rainey took Brett to Pumpkin Patch Kidz, she told him he would have tons of fun. Brett immediately exploded, saying no way, he wasn’t going to have fun and nobody was going to like him. Three hours later, when Rainey told Brett it was time to leave, he responded, “Mom, I’m not leaving. There’s no way I’m going back home.”

Rainey said the response is typical among the children who come to the program: “Nobody wants to go home.” Rainey said Brett has made friends at Pumpkin Patch Kidz, not only with other disabled children but also with their siblings who come along. At Cub Scouts Brett did not get along with a boy who now comes to Pumpkin Patch Kidz, and the two have become close friends.

Rainey said going to the program does not fix Brett’s Asperger’s, but it gives Brett an opportunity to interact with his peers in a low-pressure social setting and shows typical children they can still play and be friends. She enjoys watching him look forward to playing with someone else, sharing, and wanting to do things that typical 9-year-olds do.

Respite care ministries like Hannah’s Promise and Pumpkin Patch Kidz offer either once a week or once a month nights out for parents of special-needs children. They also welcome typical kids so their parents can have a completely free evening. Many of these ministries require numerous volunteers to sustain a buddy system, where every child, whether special-needs or not, has a personally assigned volunteer. This way other siblings can get the attention they often do not receive at home.

Respite care has given parents like Eaves and Rainey rest and support, but Barbara Majors has searched for Christian care in her area near Portland and has not found it. Daniel qualified for free, state respite care due to the severity of his autism, but Majors had to fight to receive it. With state money in short supply, Majors said officials usually reject parents the first time they apply: She had to reapply multiple times and go straight to supervisors to get the help Daniel needed.

After two years Majors finally secured free respite care through the state: “It’s been so nice to drop him off and know that he is somewhere safe.” State respite care, though, did not allow Majors and her husband to be selective about where their son stayed. Sometimes they were not comfortable with the placements, but if they raised objections they would be put at the back of the waiting list—unlikely to receive respite the next time.

Daniel is now 13. He has been out of the Majors’ home and in a group care home for about a year due to increasing aggression. Majors said she would have been willing to pay for Christian respite care if it had been available.

Overnight relief

What can one church start? Jill’s House, in Vienna, Va., affiliated with McLean Bible Church, has its own specially designed building next to the church’s Tysons campus. Jill’s House has weeknight and weekend care programs, and most children come once a month or so. Its different atmosphere, decorated with a wilderness lodge theme, gives the kids a break from sterile hospital environments.

Jill’s House is the brainchild of Brenda and Lon Solomon, who have a disabled daughter, Jill, now 20 but at the developmental level of a 1-year-old. While their daughter was growing up, a friend of the Solomons organized respite care for them, and they saw what a difference it made in their lives. On one of Lon’s trips to Israel he visited SHALVA, which provides overnight respite care for kids with special needs. The Solomons decided to start a similar ministry near their church.

Jill’s House has over 1,000 volunteers and maintains a 4-to-1 ratio of kids to volunteers. That allows the program to offer a “rhythm of respite” where children can go to birthday parties, have sleepovers, and hang out with friends. The program has given parents the opportunity for the first time in years to go out on a date, take their typical children to the movies, or even sleep through the night. —R.A.

—Rachel Aldrich is a WORLD intern at Patrick Henry College