The small button on Jose Polanco-Webb’s shirt states what he’s physically unable to say: “The only disability in life is a bad attitude.”
The 14-year-old Willowbrook boy has multiple challenges in life. A bad attitude isn’t one of them.Jose, whose nickname is Jay, was born with cerebral palsy, severe mental retardation, quadriplegia and spasticity. He’s nonverbal, cannot walk a single step, gets fed through a tube, and requires 100 percent care around the clock.
Still, he routinely flashes a 100-watt smile and unleashes infectious laughter on everyone in his world. He not only wears that motivational button, he lives it. Every day.
“Perspective is everything,” says his stepmother, Ericka Polanco-Webb.
Those three powerful words eventually become the daily mantra for many parents of children with special needs. Such an attitude, however, doesn’t always come immediately or instinctively. Oftentimes it’s nurtured over time by their own child—one smile at a time, one challenge at a time, one moment at a time.
“When you see someone who is faced with as many challenges as Jay, you must take a step outside of yourself and say, ‘If he can smile, so can I,’” says Polanco-Webb, who has three other children in her blended family, Jaylah, 13, Jesa, 11, and Jisele, 1.
“My son thrives off great energy,” she adds. “When we, as parents, aren’t exhibiting energy that is positive or inviting, it affects our children’s ability to thrive. While the situation is never ideal, it’s our reality and it’s up to us to make it a flourishing life for them.”
Beth Kaplan, a stay-at-home mom from Oak Park, exemplifies such an evolving attitude through her book, Silence 2 Success: A Mother’s Journey with Autism.
“I can definitely say that my perspective has changed many times over the course of my son’s life,” says Kaplan, whose son Jacob was diagnosed with autism at 2. “True perspective does not develop overnight. It takes time to accept your new way of life and figure out how to navigate it.”When Jacob was first diagnosed, Kaplan felt stranded on a strange island with no rescue ships on the horizon, similar to many special needs parents.
“I would try to be hopeful, but most of the time, I was devastated, scared and not sure what to do,” she admits. “I learned very quickly that finding a special needs community to become a part of was crucially important. The ability to connect with other parents and caregivers, locally, helped me develop a positive and hopeful perspective.”
Sharon Pike, parent liaison for Easter Seals DuPage & Fox Valley, says in her 24 years with that organization she has yet to meet a parent who, at some point in their journey, doesn’t battle against disappointment and discouragement.
“But as long we don’t get stuck in that place, life works out and we have a healthy balance in our family,” she says. “If we can come from a place of acceptance and positivity, life just seems easier.”
As most parents painfully understand, fighting dark feelings as well as battling other special-needs fronts—medical, educational, institutional and so on—can hijack even the best plans or intentions. Also, the initial instinct of feeling compelled to “cure” or “fix” their child can sabotage the launch of a positive attitude.
“I think parents can manage a positive attitude when they have the right supports,” says Ann Holman, social work supervisor at La Rabida Children’s Hospital in Chicago. “This includes emotional support, family back-up and resources such as transportation. It makes a difference when the parent feels supported. When the parent feels good, he or she can devote more time, energy and affection to the child, which is the best outcome.”
Kaplan, whose son is now 12, insists to other parents that they are not alone, despite disturbing feelings of isolation.
“Reach out to friends, family and your community,” she suggests.
Also, social media can be used as a buoy to avoid drowning in pity, sorrow or frustration.
Parents can share their joys and woes, which can help them navigate toward real world perspective.
“The only times I’ve stopped to consider the breadth of my ability as a parent to handle such challenges was when others have made note,” says Ellen Sternweiler, of Wilmette, who has three children with developmental differences.
“One of the most profound lessons I’ve learned on my journey is that we each have our own unique perspectives—whether we are raising neurotypical kids or kids with special needs—everything is relative to your own experience. It’s your reality. That is the perspective you gain with time.”
Dr. Sarah Bauer, a child psychiatrist affiliated with Ann & Robert H. Lurie Children’s Hospital of Chicago, says the parenting perspectives of her clients are all at different stages.
“Just as their children are developing in unexpected ways, parents are often navigating their own developmental stages. As such, it is vital to think about their children’s strengths as they figure out how to best support their challenges,” she says. “They also need to be kind to themselves.”
When in doubt, follow your child’s lead, even if they can’t verbally articulate it.
For Polanco-Webb’s son, Jay, who has lost the ability to eat and drink by mouth, he continues to lead by unspoken example. Even if it’s through another motivational button that adorns his shirt, and his life: “I think I can. I think I can.”