A weekend of support, a world of difference

It’s Sunday night, and Dr. Greg Buchert is drained from the weekend. But it’s the good kind of drained, in which you’ve poured yourself into something that matters. The kind of weekend when people in need meet people who want to help.

You could call it a camp-out. People pack swimsuits and bug spray and comfortable shoes and hit the highway for the mountains above Yucaipa in San Bernardino County.

But for this camp, they also pack feeding tubes and oxygen nebulizers.

This is Camp TLC, where parents, siblings and other relatives of children under 6 with significant disabilities meet Orange County volunteers from a wide range of social and medical services. For some of the parents, it’s their first exposure to such help, because their children might be newly diagnosed. For others, it reinforces things they already know or gives them new insights.

If that sounds clinical, it doesn’t capture the spirit of the weekend.

At its core, the trip to the mountains is a chance for the parents to breathe.

People who don’t have significantly disabled children have no idea what it’s like to care for them, no idea what such a routine can do to a marriage or one’s own life or job, or to other children in the family.

The rest of us may think we can guess at it, but we can’t come close. We can’t simulate dealing with a child who has multiple seizures a day, who screams without warning, who falls down repeatedly or who can’t be taken to a restaurant to eat with the family -- so no one goes to the restaurant.

For at least one weekend, these parents get a chance to separate from their kids.

Forty families showed up last weekend at Camp TLC, and their numbers roughly approximated the 120 volunteers who also made the trip, Buchert says.

“By having so many volunteers to take the kids off their hands,” Buchert says, “it frees the parents to be together. That’s pretty unusual to be together without the kids. The whole goal is that parents don’t have to give a second thought to the kids.”

They also can hook up with other parents to swap stories, learn of other ways to cope or get professional help. They hear from speakers who have overcome severe disabilities and carved out productive lives. In addition, the siblings of the disabled kids meet with other siblings, giving all a chance to talk about their position as the “normal” child in a family in which a brother or sister draws so much from their parents’ well of time and emotional reserves.

This story goes off in too many directions to tell here. Some of the more poignant no doubt occur in private, but many happen in group sessions in which husbands and wives meet separately.

I ask Buchert to elaborate on what the weekend does for the families. “What I see happening is that it gives them hope,” he says. “They often find themselves in situations where they are singled out, they’re lost, alone, they have to negotiate a complicated system, they don’t know what to do.”

This is much more than a networking weekend.

For example, Buchert tells the story of a father who confided that he’d hated his son. The boy’s disability precluded his being what his father expected in a son, and the immense amount of care he needed took time away from the man’s marriage and his job and his life. After seeing how other parents dealt with similar situations, Buchert says, the father realized the problem “is not my son, it’s me.”

Buchert said another couple, who have an 18-month-old son with multiple medical problems, “had never been away from the child together since he was born. The only time one left the house was to go to church, the grocery store or a doctor’s appointment. Period. On Saturday at the dance, a nurse and I said to the parents, ‘We’ll hold [the child] until the dance is over. You just need to get away.’ They went to the dance, they kissed, it was the first time in 18 months they’d had a moment away together.”

Buchert is the chief operating officer of CalOptima in Orange, a health insurance organization that administers government benefits to low-income patients, seniors and the disabled. About 20 CalOptima employees volunteered at Camp TLC.

This was Buchert’s 13th time at the camp, sponsored by the Family Support Network in Placentia, an umbrella group of support agencies. But he’s not the star of the show. He shares that billing with the other volunteers, most of whom come from the Family Support Network.

Buchert and his wife have two sons, one of whom has significant disabilities. The other son, 17-year-old Bryan, joined his father this year for the 11th time.

After hearing Buchert’s account, I wonder if there’s a bittersweet feel to the weekend. Yes, the volunteers do heroic work and the families of the disabled get some respite, but then the families return to the everyday rigors of their lives.

Buchert, a Corona del Mar resident, acknowledges the obvious but points to the successes, large and small, from the weekend. Parents who felt overwhelmed may feel less so. Siblings dealing with private sadness may have found peers who understood them.

On Monday, Buchert traded in his weekend backpack for an airline ticket to Orlando, where he will co-chair a health and management conference of some 2,000 people. It takes him back to the world he knows well, but does not blur the annual trek to Yucaipa.

“I always come away from the weekend feeling good,” he says of Camp TLC. “I always feel drained because there’s a lot of physical and emotional work, but I always feel good. I don’t think it’s heroic at all. As I told the families over and over, I get so much more out of this camp than they do.”

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Dana Parsons’ column appears Tuesdays and Fridays. He can be reached at (714) 966-7821 or at dana.parsons@latimes.com. An archive of his recent columns is at www.latimes.com/parsons.