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The Truth About Parenting: Being a Special-Needs-Style Parent

By every indication, parenting blogger Ellen Seidman had a picture-perfect first pregnancy.

"I was healthy. I ate right. I did everything 'right,'" the New York native and mom of two remembers.

But then something went terribly, terribly wrong. Not long after birth, her newborn, Max, stopped breathing. The maternity nurse gave him a hearty clap on the back, assuming the baby's lungs were just still clogged with mucus. Then Max stopped breathing again...and started having seizures. Many anxious hours and an MRI later, Seidman learned that at some point during her C-section, Max had been deprived of oxygen, and her beautiful baby boy had suffered a stroke.

"I didn't even know that was possible," Seidman says, still incredulous 11 years later. "I'd never heard of babies having strokes. I thought only elderly adults or really unhealthy middle-age men had strokes."

Strokes occur in about one in every 4,000 live births, according to the American Stroke Association. Max's stroke left him with cerebral palsy, and it devastated Seidman.

"It was the darkest time of my life," she remembers. "I was grieving the child I was expecting. I didn't know anyone else with a kid with special needs. And I just felt so alone."

That was then. Today she has the support of a thriving online community—one that she helped create.

Five years after Max was born, Seidman, a longtime magazine writer and editor who has done stints at Self, Redbook, Good Housekeeping and YM, was working at Glamour and hiring bloggers for the relaunch of the magazine's website. That's when she decided to start a blog of her own. She called it Love That Max.

"When Max was born, there weren't many blogs for parents of kids with special needs," says Seidman, who's since spun off another special needs blog called To The Max for Parents magazine as well as MaxTube, a YouTube channel for videos featuring—you guessed it—Max.

"I thought, as a mom who'd been there, experienced that and come out in a better place, I could really help inspire and inform other parents with special needs kids," Seidman says.

Seidman does exactly that, with a knowing, wry humor that bounces easily from thrilling milestones that special-needs parents can cheer and super powers that all special-needs moms have to co-opting a fireman obsession for motivating good behavior and the frustrations inherent in finding shoes to fit her son's different-size feet.

"Special-needs parenthood has its own challenges, but in many ways, we're like any other parents. We like to joke about what we're going through," Seidman says. "Our children drive us as nuts as any other kids do. Max is in a phase right now where he wants to be a fireman, and he tells me that literally every 10 or 15 minutes. Sometimes I want to run screaming down the street."

Seidman's ability to couple relatable, in-the-trenches humor with advocacy has made Love That Max the top-trafficked disability blog, a Babble Top 100 Mom Blog for three years running, and a 2013 BlogHer Voices of the Year honoree for her spare, powerful video—part of the Special Olympics' Spread The Word To End The Word campaign to urge people to stop using the word "retard."

"I speak out about offensive words that demean my child or perpetuate negative ideas about people with cognitive impairment," Seidman says. "A lot of people make jokes like 'I'm such a retard, I left my phone at the restaurant.' What people don't understand is that when you use the 'retard' as a synonym for 'stupid' or 'loser,' you perpetuate the idea that people with intellectual disabilities are stupid losers. The word 'retard' may never be totally eradicated, but we can raise awareness about treating people with intellectual disability with respect."

That's actually why Seidman decided to use Max's real name in her blogs (when many bloggers mask their children's identity) and prominently feature pictures and videos of him.

"I want people to see Max as a three-dimensional kid and really know who he is, so they can see he's just a kid. He's not his disability. It's part of who he is. It's not all of who he is," she says.

The strategy works. "I get emails all the time from moms telling me how inspiring Max is to them," Seidman says. "They see a child with cerebral palsy who is walking and has speech and is bright and loving life. I can't even tell you how great those emails make me feel. Every. Single. Time. Those emails are a reminder that he is doing so much better than those doomsday doctors in the NICU told me he ever would."

And when contemplating what the future holds for Max, Seidman takes special comfort in seeing how happy the twentysomething girl next door is. She has Down syndrome. It's always helpful to know that others are a bit ahead of you on the path you're walking and doing just fine.

"You feel less alone," Seidman says. "That's another amazing thing about blogging—that comforting, powerful feeling of community."

If you don't happen to have a neighbor with Down syndrome on your block, reading blogs can help you plug into the special needs parenting community from wherever you are. Here is just a sampling of the many blogs Seidman's loves to follow.

Into The Woods, Living Deliberately

Taking its title from a Henry David Thoreau quote, this family blog, one of Parenting.com's Must-Read Mom Blogs. is about living life with a child on the autism spectrum. It's written by Jennifer Byde Myers, co-author of "The Thinking Person's Guide to Autism." Whether she's posting about waking up shaking after a nightmare that her son wandered off and got lost; the big-deal small changes that make family holiday time easier for her son Jake to enjoy; losing their beloved family dog Gus; or pondering that great science experiment called Motherhood, Myers brings a poetry—and humor—to the surprises and challenges of autism and cerebral palsy that is always thought-provoking to read.

Uncommon Sense

With a nod to the fact that "sometimes common sense isn't all that common," Bronx blogger Dana Nieder traffics in the "uncommon sense" that people often lack when it comes to kids, like her daughter Maya, "an adorable girl with special needs and no diagnosis (not for lack of trying)." Uncommon Sense, a 2011 Parents magazine Best Blog, uses that lens to "look at life and its challenges and keep laughing, sharing and thinking creatively" as Nieder's family, which also includes her husband, their 2-year-old son and standard poodle therapy dog, rolls along. She discusses dealing with the frustration of not having a diagnosis for Maya's developmental delays; the fear that a patent lawsuit for result in them losing the iPad app that Maya uses to communicate; and the silliness of spending the morning getting Maya her non-driver ID at the DMV. Through it all, it's Nieder's mix of dry humor and fierce determination to do whatever she can to help her daughter that keeps me coming back for more.

Finding Ninee

You might wonder who's Ninee and where she might be. But Ninee isn't a who; it's a what. More specifically, it's "TuckTalk" for "airplane," according to Tucker's mom, blogger Kristi Campbell, who is "dedicated to finding humor and support for my son with delays of The Middle World [where] the spectrum exists but an autism diagnosis does not." Campell, recently seen in the 2014 Washington, D.C., Listen To Your Mother show, writes with grace and compassion, whether she's wishing that we might "live in a land where Tucker "is one of many, and the many have a variety of differences ... [but] they're not noticed because they are not important" or giving advice on battling bullying and not raising a-holes.

ATypical Son

The special needs community (virtually) stood up and cheered when Kari Wagner-Peck, mom to an adopted son with Down syndrome, called out New York Times writer Chuck Klosterman for repeatedly using the word "retard" in his writing, famously asking him, "Is it ethical to contribute to the denigration of the vulnerable?" Not only did this Portland, Maine, blogger get the sincerest of public mea culpas from Klosterman, the "Ethicist" columnist actually anted up a $25,000 donation to charity to make amends.

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