At just 3 months old, Cristian Richardson taught his mom her first lesson as a parent of a child with special needs.
Cristian, who was born with Down syndrome, rolled over on his own during his checkup with a doctor. The stunned doctor looked at Vivian and told her, “He’s not supposed to be able to do that yet.”
Vivian looked at the doctor with a mother’s pride and told him, “Well he doesn’t know that, does he?”
This memorable doctor-patient exchange six years ago sparked a lingering epiphany for the Aurora mother: “From that day forward, we never say ‘can’t’ in our home. Who am I to tell my child, you can’t? Cristian can, and he does, with everything.”
For parents of children with special needs, it’s often too easy to fall into the trap of low expectations and even lower hopes and dreams. Partly to blame is a society that still places value on what these children are, not who they are, experts say. It also doesn’t help that parents have to deal with outdated labels and antiquated stereotypes.
“It’s not about raising the bar, it’s about removing the bar entirely,” says Judy Winter, author of Breakthrough Parenting for Children with Special Needs.
Winter, who parented a child with cerebral palsy until his death in 2003 at age 12, says parenting children with special needs is the human rights struggle of the 21st century. Her number one tip for parents is to focus on their child’s value, not their voids.
“Parenting special needs children is the most sacred responsibility in the world,” says Winter, a Michigan-based advocate who connects with parents through her Web site, www.JudyWinter.com. “But it’s also the most challenging responsibility.”
Sarah Bak has been challenging her mother since she was born in 1999 and Lora Bak has enjoyed every minute of it. Sarah, who was born with Down syndrome, doesn’t hesitate when asked what she wants to be when she grows up. “A teacher or a librarian,” the 9-year-old Glen Ellyn girl says shyly.
Sarah has almost single-handedly transcended lingering labels and societal stereotypes, and she’s done it with calloused hands, not a calloused attitude.
Years ago she was determined to climb across the monkey bars at school just like every other student, even though her mother feared for her safety and, worse yet, her possible failure.
It didn’t stop Sarah, who practiced every day over the course of a summer. By the time she returned to class the following school year, with those calloused hands, she could easily climb across the monkey bars. That feat led fellow students to nickname her the “Monkey Bar Queen,” she says proudly.
“Sarah knows she has Down syndrome-she has since kindergarten-and she knows she has things harder than other children,” says her mother. “But Sarah places very high expectations on herself and we haven’t gotten in her way since she was a baby.”
Not only is the third-grader a Monkey Bar Queen, a cheerleader and in Brownies, but she also earned a Special Olympics gold medal in figure skating last February.
“When we found out Sarah had Down syndrome, we thought our lives were over,” Lora admits. “However, she has taught us that we were wrong.”
This all too common “our lives are over” realization is one of the biggest myths confronting new parents of children with special needs, according to Winter, who insists there has never been a better time to raise such children.
New technology, a new generation of parents and higher new expectations are erasing old-fashioned perspectives, she says. And the high number of children with autism has become a tipping point to raise a new awareness for kids with special needs.
“The idea of raising the bar, or removing it, is still a fairly new concept,” Winter says. “As recently as the 1970s, many of these children were institutionalized and hidden away from society. Today, parents wouldn’t think of such a thing.”
Jessica Spizzirri is among this younger group of free-thinking parents. The St. Charles mother of two has high expectations for both her daughters, including 8-year-old Sophia, who has Down syndrome.
“To say she is the center of our universe would be an understatement,” Spizzirri says. “We hope to give both our daughters everything they need to reach their God-given potential.”
Sophia is a regular visitor at Gigi’s Playhouse, a Down syndrome awareness center with several locations in the Chicago area. There, she plays with 6-year-old Cristian Richardson, who recently taught his mother another uplifting lesson.
Cristian, whose developmental disability hinders him from speaking in complete sentences, managed to tell his mother exactly how he felt, “Mom, I’m cold.”
It didn’t matter to Vivian Richardson whether Cristian was “supposed” to be able to do that or not. “I got so excited,” she says.
Richardson believes the problem for many parents is they don’t expect enough from their children, and those children then aspire to meet those lowly expectations-and little more.
“My son routinely surprises me, yet I don’t believe he ever surprises himself,” she says. “He just shoots for the stars, thinking it’s the only way to be.”
Tips for parents
• Don’t ever doubt your child’s value and ability to reach his or her full potential, regardless of diagnosis or prognosis.
• Bond with your child as soon as possible after birth, including in the intensive care unit. Don’t waste a moment of this critical stage of your child’s life.
• Never forget that you are your child’s first and best teacher.
• Use proper terminology to address special needs, and place such words after the child’s name (for example, the child with autism, not the autistic kid).
• Don’t put professionals on pedestals. They are human and make mistakes. Welcome their valuable expertise, but don’t worship them.
• Make some noise. Parent power really does help create much-needed change.
• Push for regular classroom settings.
• Involve your child in after-school activities whenever possible.
Source: Breakthrough Parenting for Children with Special Needs
Jerry Davich is a Chicago area writer and dad.