4 Life Lessons From Parents of Kids With Special Needs

Moms and dads whose children have special needs can teach all parents a thing or two about priorities and perspective.

Parents cover stars Amanda Booth and son Micah, 2 Stephanie Rausser
Several years ago, I sat down for dinner with my husband and two kids and leaned over to cut my older child’s meat. He was 10, and I’d been mindlessly doing it for, well, forever. But something stopped me in my tracks that night. I was a dean at Stanford University at the time, and the previous evening I’d given my annual talk to parents of freshmen about “letting go”—resisting the urge to constantly check up on their kids or handle the daily tasks of college life for them and instead allow their kids, heck, even expect their kids to manage for themselves. And there I was, cutting my own son’s meat.

At that humbling moment, I made the connection between my behavior as a parent and the skills that I’ve seen too many young adults lacking these days. Over-helping children, albeit lovingly intended, can leave them standing helpless at the doorstep of adulthood. There are 18-year-olds who can’t fill out forms, make a meal, meet a deadline, do laundry, fill their own gas tank, or figure out what to do when their car breaks down. Believe it or not, there are even students whose mother calls them every morning to make sure they’re awake in time for class.

I also started thinking about my friend Stacey Ashlund, whose 17-year-old son is hearing-and vision-impaired. She knows that her son’s disability might limit his ability to lead an independent adult life, and she has worked to help him be as capable as possible. In fact, parents of kids with all kinds of special needs are proactive about teaching life skills—and may end up raising kids who are even better than their typically developing classmates at fending for themselves as adults. It’s a lovely irony, actually. Over time, I’ve discovered that there is a lot that we can all learn from parents of children who face such challenges.

Let Yourself Be Needed Less

For our kids’ sake and for the sake of society at large, we need to do a one eighty: Stop measuring parenting success by how much we do for our kids and start measuring it by how much we’ve taught them to do for themselves. It’s not our job to always make life easier for our kids; we need to prepare them to deal with the tough stuff. And in order for them to constantly grow and develop, they have to be out of their comfort zone sometimes.

When you’re teaching your child a new skill, whether it’s tying his shoes, crossing the street, using the stove, or getting out the door each morning, try the smart four-step method that Ashlund uses with her son as well as with her typically developing 14-year-old daughter:

1. Show your child how to do it.

2. Do it with him.

3. Watch him do it.

4. Let him do it independently.  

Amanda Booth, the model on the cover of this issue, has taken a similar approach with her 2-year-old son, Micah. He has Down syndrome, which causes weak muscle tone that makes it harder to walk. “First we taught him to sit up, and then we taught him to go from a sitting to a standing position,” says Booth, who lives in Los Angeles and blogs at TheBeardAndBump.com. “Whenever I notice that he needs less of my help, I stand back and let him try and fail. That’s the only way he’s going to get comfortable with the idea that he can do something new. I don’t say, ‘Oh he can’t,’ or ‘He’ll hurt himself.’ He’ll need to practice and practice until he can do it on his own.”

Three thousand miles away in Fort Washington, Maryland, Eric Jackson is showing his 10-year-old son, Ellis, who has autism, how to cook. “I do it with him in small chunks. If he drops the egg, fine. If he puts too much water in the batter, fine,” he says. “I celebrate when Ellis makes his own food.”

Accept That Your Kid Might Be Different Than Imagined

Perhaps she’s less academically successful than you’d expected, less articulate, or less outgoing. Maybe you’d hoped for an athlete but got a bookworm. Or vice versa. All too often we’re tempted to “fix” these perceived problems and do our darnedest to make our kids into the person we’d always dreamed they would be. But this can make them feel that we don’t love them—we love our image of who they could be if they only tried harder to meet our specific expectations.

“When I was pregnant we had everything planned out in our head,” says Booth. “Micah would ride a motorcycle like his dad and maybe be an Olympic swimmer.” When he was diagnosed with Down syndrome, most of what she and her husband had hoped for Micah went out the window. “We’ve known since basically Day 1 that we can’t allow ourselves to put him in any sort of box. We must step back and really look at Micah and allow him to lead us where he’s going to go.” How many kids wish they were accepted this unconditionally by their parents? “It’s such a relief to have learned this early on with Micah,” adds Booth. “I’m not going to be that parent who tried to make her kid become a lawyer and is devastated when the kid decides at age 25 not to do that. That’s not an option for us. The thing that seemed so devastating at the beginning is actually the silver lining.” 

Slow Down

Family life can be a hectic scramble between work and home, homeroom and homework, playdates and playing fields. And all of that can make us some combination of freaked out, hasty, and grumpy. “We expect typically developing kids to react instantly to everything we say,” says Jackson. “But I know Ellis may need additional time to process what I’m saying. I need to give him time to understand and respond.”

Jackson credits Ellis for helping him finally let go of the impatient perfectionism that once served him well as a trial attorney. As a result, Jackson’s now more gentle and easygoing with all three of his children. “The older ones may be more advanced cognitively, but they still want my patience and unconditional love and for me to let them make mistakes.”

Slowing down also means appreciating all of the simple moments in our kids’ lives, things Ellen Seidman calls “inch-stones.” Seidman, who writes Love That Max, a blog about raising kids with special needs, has a 13-year-old son named Max who suffered a stroke at birth, which resulted in cerebral palsy. She also has two younger children who are developing typically. With Max, the milestones Seidman read about in baby books often didn’t come on time and sometimes not even at all. “He didn’t walk when most of the other children did, and he didn’t talk when most of the other children did,” she says. But she eventually came to accept that he was on his own timeline and learned to appreciate his development regardless of its pace. “I’ve tried to focus on the assets he has, rather than on what he’s lacking. I’ve found that it’s easy to get caught up in how our kids will progress and forget to recognize and be grateful for what they already can do,” Seidman says. 

Stop Obsessing About What Others Think

Any good psychologist will tell you that it’s not useful to worry about others’ opinions of you, but that’s often easier said than done. Ron Fournier, a former White House correspondent, simply didn’t know what to make of the behavior of his son Tyler, who was diagnosed with Asperger’s syndrome at age 12. A socially adept person whose work revolved around interacting with important people, Fournier was embarrassed by Tyler’s blunt comments and inability to make eye contact. He realized that he had to shift his attitude the day he took Tyler to meet President Obama and Tyler said, “I hope I don’t let you down, Dad.”

As he describes in his new book, Love That Boy, Fournier found that spending more time with Tyler and getting to appreciate his quirks allowed him to stop worrying about what his son “did wrong.” He came to realize that his own attitude—rather than the opinions of others—was the elephant in the room. “My stomach clenches as I realize the problem here isn’t my son,” he writes in his book. “It’s not even autism. It’s me.”

Seidman also struggled with overcoming how much she cared about the judgment of others. “It was painful for me to see Max with other kids at birthday parties. So I decided to let my husband start taking Max to the parties instead,” she says. “It’s okay to be aware of what other people think but say, ‘Hey, I’m not going to put myself in that situation.’ ”

However, she also came to appreciate what she considers to be Max’s personal philosophy: “I am who I am.” His disability helped her accept that no matter how hard she tries, she can’t always control what happens to her children, and that’s a lesson we all could learn.

Julie Lythcott-Haims is the author of How to Raise an Adult: Break Free of the Overparenting Trap and Prepare Your Kid for Success.