The Challenges of Raising Special Needs Children
Caring for a child who physically, emotionally or behaviorally strays from the norm comes with its own set of stressors for parents. It takes a sensitive village when raising a child with special needs—here's how all of us can help.
Saturday morning errands were going off without a hitch for Lauren Cook and her then 11-year-old twin foster sons. But when the San Antonio, TX, mom was halfway through her grocery shopping, Isaiah and Santiago said they needed to use the restroom. Ushering them into the ladies' room with her, she calmly ignored the stares but was shaken by one stranger's comment. "This is the ladies' room," the woman said, annoyed. "It is?" Lauren asked sarcastically. "Well, my children have mental retardation and they can't go to the restroom on their own." The woman said nothing and walked away. But Lauren was seething as she guided the boys into the stall.
Everyday events can require extraordinary emotional effort when you're parenting a child with special needs. But while these moms and dads often feel like there's a spotlight on them, they're far from alone on that stage. Children with differences are all around us. Nearly 3 million school-aged kids are physically or mentally disabled. And many other children bear the scars of accidents, for example, or exhibit behaviors that stray from typical gender norms. However, these kids and their parents probably spend more time trying to fit into the mainstream world than the mainstream tries fitting into theirs—occasionally even making special needs parents and their kids feel like outsiders. (P.S. Here’s what many moms of kids with disabilities won’t tell you.)
"At times it can be chalked up to fear," explains Robyn Trippany Simmons, Ed.D., a licensed professional counselor and registered play therapist in Decatur, AL. "You're afraid it could be you pushing your own child in a wheelchair, for example. But more often it's just not knowing what to say or do."
We asked five moms of kids who are different to share their experiences related to parenting special needs, plus their hopes and fears. After hearing these women's stories, you'll know exactly what to say and do the next time you come across a child with special needs, like theirs.
What It’s Really Like Parenting a Child With Special Needs
Kris Giesen of Wheaton, MN, frequently feels judged for her parenting of 7-year-old daughter Finn (short for Fionnula), who has autism. (Check out another mom’s perspective on raising a child with autism.) Finn has good days—and difficult ones. A routine trip to Target can become a source of profound stress when the lights, crowds and noise of a busy Saturday overwhelm Finn's senses. She'll throw her head back, scream and kick. As Kris tries to hurry her out of the store, people are often quick to toss unwanted advice their way. "If you just tell her no, this wouldn't happen," she often hears. Kris makes an effort not to take things personally, but these experiences can be draining. "Try to understand," she says. "We're a normal family trying to do the best for our kids, just like any other parents."
Being judged is an experience Wendy Norman of Lakeland, FL, can relate to. Her 9-year-old daughter Sophia Joy is a happy child who loves to laugh at her twin sister Gigi's jokes. However, when people first notice the physical features of Sophia's cerebral palsy and epilepsy, they often react with uncomfortable stares. "When I'm feeding her at a restaurant, I've learned to turn her chair so I can shield her," says Wendy. "She burps and it can get messy. People look at us and I imagine them saying, 'That's a whole lot of work to go to Applebee's.' "
Watching a parent feed a disabled child might make you uncomfortable or curious, but keep in mind that a little empathy can go a very long way to bolster that special needs parent. Simmons suggests, "Put yourself in her shoes. She loves her child just as you love yours, and she's going about her day just like you are. It's fine to look at people when they catch our attention. But once you realize that this is a family having dinner, smile just as you would at any other mom. This can assure her that 'hey, I've got your back.' "
No matter how hard we try to protect them, some kids bear the visible reminder of an accident. Wanda Pickett's 12-year-old son, Ricky, was badly burned in a bonfire mishap. The Turtle Lake, WI, mom works to project optimism but is frustrated by people's reactions of pity. "When I first told my mom about Ricky's accident, she said, 'He was going to be such a handsome man.' I got mad! I told her, 'He'll still be a handsome man!' "
For Ricky, the biggest adjustment has been to how people now treat him. Wanda explains, "Kids who know him ask me questions like: 'Is it going to make him different?' " She's fine with that. It's adult behavior that bothers Wanda and Ricky. "People notice him and change their tone of voice, asking, 'How are you feeling?' Ricky doesn't want to be babied!" It's natural to want to nurture a hurt child, but it's critical—particularly for older kids—to be mindful of the child's age.
The twins' mom, Wendy, has had plenty of encounters with people who feel sorry for her because Sophia didn't come out "normal" like Gigi. They stumble to find words about what a comfort Gigi must be. Wendy picks up on this unease, "almost like when someone dies and they don't know what to say. But I don't want people to feel sorry for her."
Kids don't want to be made to feel different, and special needs parents don't want to be pitied. In fact, someone's search for comforting words is often more about their uncertainty over what to say or do than it is about the parents and children they're talking to. For moms like Wanda and Wendy, this life is their norm. Don't guess at what to say, suggests Simmons. "Just be willing to listen for a mother's need for support," she says. "See if she can use a hand with something the same way any mom might."
Even tougher to relate to than an accident or disability are the challenges some parents face dealing with their child's core sense of self. Carolyn Clarke of Sacramento, CA*, learned this when she and her twin boys, Sam* and David*, who were then 3 years old, were running errands. David was talking about someday being a daddy and growing a beard. Sam announced that he wanted to have long hair and be a mommy.
Carolyn was speechless at this revelation. Sam didn't drop the topic that day—or any other. At one point, Carolyn bought Sam a dress, still questioning whether this was a phase the child would grow out of. Instead, Carolyn describes Sam "twirling around the living room with a happiness I'd never before seen in my child." When Sam persisted in asking questions like when would he become a girl or whether she would buy him girls' playthings, Carolyn began her research. She looked for an expert on transgender children, eventually locating one in another city.
Carolyn has encountered a great deal of animosity from other parents in Sam's former schools. "What's going on at home?" "Why aren't you setting boundaries?" they'd ask, assuming that Carolyn's parenting was causing her child's gender nonconforming behavior.
After nearly seven years of raising Sam as a girl, Carolyn explains, "the goal was to have a healthy, happy child. What is the level of distress, and what do we need to do to get her out of that stress?" She continues to help Sam understand why children are sometimes mean and exclusionary, but worries as she looks ahead. "I can only do so much," she says. "I can give her tools, but I'm scared of what the future holds for her."
Each of the moms I interviewed expressed the same concern about raising a child with special needs—perhaps one of the reasons they volunteered to share their experiences. These are everyday mom worries, of course, though for those raising kids who are different, the concern may be a bit greater. And yet, the answer is similar: peer support. Reflecting on Lauren's story of taking her 11-year-old sons into the ladies' room, Simmons offered this: "How different it would have been if someone had said to her, 'You take care of the boys. I'll stand by the door and let anyone who comes know that there's a woman helping her sons who can't use the bathroom on their own." How different, indeed.