When a child’s challenges first emerge—whether it’s at birth, as a toddler, or during the school years—parents often find themselves feeling not only confused but alone. You may not know anyone who’s experienced the same kinds of problems, and it may feel too painful to share the details of what you’re going through with friends whose kids seem to be sailing through all their milestones.
Even after you’ve gotten a diagnosis from a professional, you may have many questions that aren’t the kind your clinician can help with.
This is where special-needs communities can become key. By finding other parents who are facing, or have faced, the same issues, many parents feel better able to navigate a path they never envisioned.
Thanks to the Internet, a few keystrokes is all it takes to find support groups both on- and off-line via a variety of sources, including nonprofit organizations, Facebook pages, Meetup groups, and local listservs. Often, parents you connect with can lead you to other groups until you find the right fit.
“These groups can really fill a gap for parents who might not know anyone with a child who has OCD, for instance, or is on the autism spectrum,” says Mandi Silverman, a clinical psychologist at the Child Mind Institute who has moderated support groups for parents of children with autism. “Just knowing that someone else is seeing some of the same behaviors you are can help you feel more grounded and less alone in your journey.”
Here are some of the reasons to seek out parent groups:
They make you feel less alone
When parents begin noticing that a child isn’t developing like his peers or first hears a diagnosis, it’s comforting to know there are other kids out there like yours-and other parents who “get” what you’re going through.
When Laurie’s son Stephen was diagnosed with non-verbal learning disorder, along with Asperger’s, she said, “no one I knew had heard of it or knew anything about NLD. I got stupid comments like ‘But he speaks so well,’ ‘He’s too smart to have that’ or ‘I’m sure he will outgrow it.'”
She says she was lucky to find an NLD online group. “Within the group, I found people who understand, who have the same struggles, who hear the same stupid comments and have the same concerns. I found a village.”
They’re a place to find resources
Susan Kleiman, who founded the Special Moms Network, said her first goal was to help parents find the kind of resources she struggled to find when her own son was born with multiple disabilities.
Groups can offer a wealth of information on anything parents might need—from books and articles to playgroups and camps to marriage counselors who deal with special-needs situations.
Dr, Silverman agrees that groups can offer valuable resources, but notes that suggestions that involve treatment should be checked out with a professional. “There’s a lot of information out there, and some of it is incorrect, ineffective, harmful, or a combination of these things.” (Think Jenny McCarthy and the anti-vaccination movement within the autism community.)
They’re a place to find support
Lee Anne Klopp Owens, who has two sons on the autism spectrum, says her strongest support comes from people she chats with daily on Facebook but has never met. This online group of parents and caregivers has “honestly saved my sanity many times.”
“Recently, my youngest was a behavior nightmare both at home and school,” she says. “Between the emails and phone calls from his teacher and dealing with his behaviors at home, I was a frustrated, tired mess. Without the support of my online friends, I am sure I would have had a meltdown myself!”
Laurie says that because her NLD group is international and filled with people living with the disorder, from teens to seniors, along with parents and some professionals, she is able to find help “not just for my son, but for myself and my family. Instead of going to group therapy or a local support group, which doesn’t exist, we have it online and it’s available 24/7.”
They’re a safe place to vent
When a parent hits a low point in dealing with a child, others who have been there can share their own frustrations and say, “It’s okay to feel what you’re feeling. Ignore those who don’t get it. We do.”
Owens says being able to blow off steam this way is especially valuable: “I never have to filter my thoughts and feelings with the group. They brainstorm ideas to help my children, and me, when I feel I’m at the end of my rope.”
They’re a place to share triumphs along with disappointments
Someone may share that her son said his first few words, or that he’s taking his first steps after six years of physical therapy. “You see the happy stuff,” Kleiman says. And when someone has something nice to share, she says, the group’s Facebook page lights up with Likes.
Groups are also a place to hear “It gets better.” Kleiman says it’s especially helpful for younger parents to hear that others have faced the same struggles and now their child has made strides.
One caveat: Dr. Silverman cautions that there’s the danger of a parent generalizing another child’s progress to his or her own child. Especially with autism, she notes, “every child is different. It’s very easy to hear one parent’s story of symptoms improving drastically and think ,’That’s going to be my story.’ It may or may not be.” She recommends looking for support but not comparison.
They can help you appreciate the child you have
Dr. Silverman recalls the time in one of her autism parent support groups when one mom said, “I wish my son would stop going up and talking to random kids at the playground.” Another parent said, “I wish my son would go up and talk to other kids.” In that moment, she noted, the first parent stepped back and was able to value what her child was doing.
Finally, they’re a place to form deep friendships
When children’s differences make it difficult for them to socialize or make friends—perhaps they don’t participate in sports, they go to different schools, or they have social skills deficits that end up meaning no invites to birthday parties or play dates—their parents can become isolated, as well. There are no events where parents would normally meet, mingle, and form a community.
This is where even online groups can be the start of adult conversations and powerful friendships with “your people”—people who care about how you and your child are doing.
Laurie says she made a close Facebook friend her own age who had NLD. “He was determined to help my son have a better life than he did and he gave me great insight,” she says. When he died suddenly, “the shock that went through our group was incredible. He was struggling himself but always reached out. A writer within the group put together a memorial and everyone contributed to it.”
She also remembers a time in her Asperger’s group when a young adult went into a homeless shelter and somehow got transported to Texas from Florida. “The mom was distraught and overwhelmed and really couldn’t function,” she says. “Within hours, the community rallied around her, got in touch with people in Texas who could help, found her son, and got him into a program and place that would help him. I was amazed at the power of the group.”