A weekend of support can make 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.
