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
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doesn't help that parents have to deal with outdated labels and
"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
"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
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
"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
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
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
• 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
• 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
• Make some noise. Parent power really does help create
• Push for regular classroom settings.
• Involve your child in after-school activities whenever
Source: Breakthrough Parenting for Children with Special
Jerry Davich is a Chicago area writer and dad.
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