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'We were exhausted'

"'We were exhausted'" Continued...

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

“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.

—Rachel Aldrich is a WORLD intern at Patrick Henry College

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