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Facebook, other websites transforming into new grieving and recovery ground for families

Published: Sunday, Feb. 23 2014 11:55 p.m. MST

Facebook is the new grieving and recovery ground for just about every support group, including Utah groups for reactive attachment disorder, infertility, ataxia, select mutism and more.

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SALT LAKE CITY — In 2009 a South Jordan woman was told her unborn daughter was ill. Katelynn had a rare chromosome problem. As family members and friends tried to comfort her through phone calls, Leta Greene found she simply didn't have the time to stay in touch with everyone while caring for her other two children.

That was when she turned to Facebook. Greene created a page, "Caring for Katelynn," which allowed her friends to follow her progress and read the updates she posted.

Just 54 days after her birth, Katelynn died, leaving behind a grieving family.

"Facebook was something I had never thought (to use) to share those kinds of feelings," Greene said. "It kind of accidentally happened, but it opened gateways that people from all over the country and the world — that I actually am still friends with some of these people — reached out to me during that time."

Like Greene, others have turned to Facebook and other online support groups to find solace or connect with those who are feeling a similar pain. It is the new grieving and recovery ground for just about every support group, including Utah groups for reactive attachment disorder, infertility, ataxia, select mutism and more. Searches in Facebook will show groups for almost any support group imaginable.

Kim Shirts Deverall has a four-year-old son who is autistic. She said there are many resources for Big MAK's, or mothers of autistic kids, in northern Utah that she misses out on as a Washington City resident.

That's when she began the Big MAK's of St. George Facebook group. It started with five members, and grew steadily to it's current size of 35.

"It's mostly moms with frustration that are venting on the page," she said. "They don't know who else to complain to or to get advice from."

More support

On March 12, it will be exactly one year since Alysa Claverie's now four-year-old was diagnosed with Pre-B Acute Lymphoblastic Leukemia. When she heard the words, "your daughter has cancer," her mind was flooded with questions.

Her family had just moved to Salt Lake City from Colorado. Her support group was in Denver.

"Not having that support, we would have felt pretty alone with just the fear that you deal with daily, the anxiety, the worry," she said.

But as she joined the cancer world, she also joined a Facebook group with 285 members called Utah Moms with Cancer Fighting Cuties.

When doctors thought her daughter Presley had relapsed in January, it was the other cancer moms who jumped into action.

"They were the first to respond and the ones that truly understand what you're going through," she said. "They're really truly the only ones who feel what you're going through and can say 'I understand this crazy world.'"

Kathie Supiano, clinical social worker and program director of Caring Connections, a bereavement counseling program, said there are many opportunities with technologies that can be positive for those who need support.

She said online support groups — like Facebook, Skype, Adobe Connect, blogs and other forms of social media — give users a sense of anonymity that make participants feel more comfortable. She said it can connect those who need support from any location during any time of day, particularly in the middle of the night.

"They don't call it the witching hour for nothing," she said of the most difficult time of day for those who are grieving.

However, Supiano warns that groups should be managed by a professional.

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