Marianne Russo is a household name to hundreds of thousands of people around the world. The Bayville resident is known for her tireless work as an advocate who empowers the parents of special needs children. Yet Marianne is a very private person. She prefers to work behind the scenes on a microphone, on her computer and her smartphone.
Marianne was a court reporter, a career which allowed her some flex time to be with her husband and three daughters. But more than a decade ago life in the Russo house changed dramatically.
Their daughter became ill with a typical strep infection and began to exhibit behavior uncharacteristic of their once bubbly six-year-old, including tics and obsessive compulsive tendencies. After going to numerous doctors, she was diagnosed with PANDAS, an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections.
PANDAS is a rare autoimmune disorder that can be difficult to diagnose. But Marianne wasn’t deterred. She learned that when a person has a strep virus the body’s defenses are trying to attack the strep bacteria, but with PANDAS, it attacks part of the person’s brain.
Marianne left her job to care for her children full time. She began sharing some of the information she learned about autoimmune disorders on Twitter and quickly found a large number of parents of special needs children who were seeking information and support.
“Within months we had hundreds of moms talking,” she says. “I set up a chat room and it went crazy. It really doesn’t matter what the diagnosis was, the emotions and challenges are universal.”
Marianne’s morning chat gave parents a forum where they could communicate with each other. But Marianne realized that a glut of misinformation being shared needed clarification.
“I knew how to get in touch with the best doctors in the world,” she says. “I could bring the doctors on a talk show so the parents didn’t have to be misinformed.”
She founded The Coffee Klatch Special Needs Talk Radio to help parents navigate through the often complex and isolating world of special needs parenting. The Coffee Klatch airs a variety of shows and segments covering topics that affect children with all disabilities, with a strong emphasis on autism. Marianne can recite the list of experts and their accomplishments who have been on her show verbatim.
Temple Grandin, the subject of an Emmy award-winning HBO documentary, is a frequent guest on The Coffee Klatch, and talks to parents about gifted children. Dr. Richard Selznick, a nationally certified school psychologist, speaks about children whom he calls “shutdown learners” because they struggle in school. Dr. Russell Barkley, another popular guest, is known as the foremost expert on Attention-Deficit/Hyperactivity Disorder (ADHD).
With more than 180,000 listeners, the popularity of The Coffee Klatch continues to grow.
“I only choose guests who are the best in their field,” Marianne says. “The Coffee Klatch is a non-judgmental, respectable venue, no politics or religion, just support.”
Marianne believes that helping parents to accept their children as they are is critical to the family’s well-being.
“Once you accept that your life changes and will be different, then you can move forward,” she says.
Parents should be cognizant of their children’s feelings, Marianne explains, and not expect to transform their children on demand.
“We want to fix them,” Marianne says, referring to the children,“but they are not broken, and we need to choose our words carefully so the kids don’t think that they’re broken.”
The special needs community is divided on some issues so Marianne selects topics to be discussed on air with care. You won’t hear about the vaccine debate on her shows.
“Nothing you say is going to change anybody’s mind,” she says about the controversy surrounding their use. “It’s like politics.”
Marianne would rather focus on proven answers and treatments. Dyslexia can now be treated in boys because of the studies that were done on XY chromosomes, she says, adding that there have been advancements in the treatment for children with bi-polar disorder as well.
The Coffee Klatch shows also share information on children’s education and their rights to be provided an education commensurate with their physical, mental or emotional disorder.
“School is another challenge,” Marianne says. “It’s so stressful to educate these kids; we want to give them options.”
But, she adds, “We need more advocacy on the local level.”
The course of treatment for many of these children follows the DSM-IV, the manual used by clinicians to provide a formal diagnosis of autism and related disorders published by the American Psychiatric Association.
“Up until now children were diagnosed with mental illness on the same scale as adults,” she says. When you hear the words “mental illness,” take out the “mental” and remember “illness,” she advises.
The Coffee Klatch has aired several shows on the DSM-IV guidelines. The updated DSM-V is being released in 2013, so educating parents on the impact the revisions can have on their children’s diagnosis, services and treatments is a top priority for Marianne.
“There’s a difference between being diagnosed with a disorder or a disability,” she explains.
Because Marianne has walked in their shoes, she knows that the challenges that are faced may be different for each child, but the emotions and the impact on the family are the same. She advises parents to boost their children’s self-esteem with praise, positive reinforcement and love.
Her quest for finding vital information to share with parents is as strong today as when she began her quest for answers almost 15 years ago.
“I love when I meet somebody that could help thousands of people,” she says.
As a parent advocate and the voice for the many who cannot speak for themselves, Marianne vows to continue seeking the experts who can give these parents what they so desperately need for their children: hope.
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