Avoid becoming the know-it-all mom of a child with special needs
As mom to a child with Down syndrome, I've met dozens of women walking a similar path of guilt, joy, fear, hope, despair and frustration. The last thing I need is a smackdown from the mom who has been there, tackled that problem and will share her wisdom until her laptop battery dies or she gets laryngitis (which, FYI, never happens).
I once attended an event for new parents of a child with Down syndrome. A "veteran" parent stood up at one point and said, "I know every single one of you has speech for your child already, right?" It was intimidating and annoying, all at once. She was clearly saying she knew best for our kids, even though she'd just met us — and her speech sounded like she was challenging us to admit fault.
"No one likes a know-it-all," sums up Cheri Foreman, who has a son with Down syndrome. "This road is hard enough without having someone in your own community make you feel bad."
Parents on the giving or receiving end share tips for avoiding becoming the know-it-all mom when it comes to special needs issues, or really any issues.
Know-it-all mom or know-it-all person?
"I think this is more about personality than circumstances," shares Sara Weiss, who has a son with Down syndrome. "In my experience, people that know everything about how to raise my children also know everything about everything else."
True know-it-alls are unlikely to realize their habit. "I've learned over the years how to tune out and ignore KIAs [know-it-alls]," says Beth Goodman, who has a child with Down syndrome. "There's really no arguing with them — you'll never convince them that they're wrong."
Presentation can be everything
No one likes to feel attacked, and tone can be very different online than in person. "If people say, 'What do I do?' and you have a possible solution, give the advice!" Weiss says. "If people say, 'I'm sad/mad today,' then give them a hug and a glass."
"I tend to try to 'feel out' a person before I begin talking about my experience," Goodman shares.
Unsolicited advice can really hit at the wrong moment. Weiss explains, "Sharing good info you've learned about is very different than offering unsolicited advice regarding my kids."
Weiss says a family friend once told her, "I know you are struggling with [your son's] PT. Maybe if you worked less and spent more time working with him, he'd be walking by now. I quit my job because I realized [my daughter] needed way more attention."
Ask, but follow your gut
If you're really not sure whether a person wants feedback or empathy, ask. I've asked, "Do you want me to give you honest feedback or do you want me to give you a hug?" Asking the question clears the air, but beware the person who says, "Oh, of course!" and then shuts down. Watch for body language and know when to back off.
Relate to the issue
"I always try to end a conversation with, 'That's what worked for our family. Try it out or don't — you have to find what works for your family,'" Goodman adds.
Foreman advises an intuitive approach. "Meet me in my moment," she says. She recommends any advice should leave a parent "with hope and a feeling of empowerment, never defeated or scared."
Dos and don'ts of planning the future for a child with special needs >>
The share-it-all approach
Larina Pierce is an avid Facebook user and a veteran of prompting and contributing to conversations about issues relating to children with special needs.
"I share it all when I feel like I have anything useful to say," Pierce says. "I've found that sometimes a tiny thing I say actually helps someone in a big way. I'm sure it's annoying at times but my heart is always in the right place."
Pierce says she employs that tactic because as a mom herself, she appreciates when veteran parents share details about their experiences. "I am able to pick and choose what I find helpful and I presume others can do the same."
Jenn Scott has a son with Down syndrome. "I share it all when it comes to areas that I know a lot about. Like the thyroid — I've done a ton of research, and if I can help a family cut those hours spent researching and get right to the root, then great.
"On other subjects I have some experience, sometimes I'll share. Sometimes not. I always put the disclaimer of, 'This worked for [my daughter] or this didn't work for [my son],' and why I feel it did or did not help our situation and what led me to feel we needed to go down a specific avenue."
Kind words always help
Sometimes, we all just need to hear that everything's going to be OK. "I'm fairly certain I fall into the, 'He's going to walk, he won't be 30 [years old] and crawling, I promise' category of advice offerers," says Rebecca Bumgarner, whose son has Down syndrome.