By Joyce DeWallace, Contributing Writer
Grafton – As a founding member of Talk About Curing Autism (TACA), Grafton resident Mary Romaniec goes above and beyond to fulfill the group’s goal of providing education, support and information to caregivers of those with autism. TACA believes in early diagnosis, intensive therapies and medical intervention.
When her son Daniel was diagnosed in 2000, she was looking for information. The first group she contacted was focused on sharing experiences without solutions. Romaniec dubbed it “a pity party.” She wanted and needed more.
At the time she was living in Southern California, and had left her job to provide for the needs of daughter Theresa and her son, Daniel, who was born with a bilateral club foot.
“I had to change my priorities to take care of my children,” she recalled. “By the time Daniel was 7 months old, my husband Richard and I saw that he was significantly delayed. He couldn’t lift his head. He had high sensory issues, a high pitched scream that sounded like a wounded cat. He couldn’t feel cold and was highly sensitive to heat.”
At 16 months, a therapist suspected autism, which led to a battery of diagnostic tests and led to confirmation of that assessment at 18 months.
Romaniec searched the Internet for anything that would help her help her son. She found books that discussed problems with food – “Special Diets for Special Kids” by Dr. Lisa Lewis and “Unraveling the Mystery of Autism and Pervasive Developmental Disorder” by Karyn Seroussi. Both explained dietary intervention and the benefits of removing gluten and dairy products from the diet. Romaniec started the program immediately and saw results within a week. She noted that Daniel seemed to feel better, had more eye contact, less crying and better digestion. She knew she was on the right track.
Still looking for other people in similar situations, she found a group of savvy parents meeting in another parent’s Southern California living room. They were talking about all the relevant things she needed to hear and were focused on solutions, exploring whatever would help their children.
“I found my tribe; I wanted to be like them,” Romaniec said. “I was the desperate mom. I was a guilt-aholic.”
From them Romaniec learned to embrace the philosophy that autism was treatable. She became an educated researcher, and learned about Intravenous Immunoglobulin (IVIG) Therapy. Although only 2 ½, and the youngest candidate, Daniel responded amazingly, and by age 4, lost all traces of autism. Now, at 15, he’s described as, “recovered, but not cured, because the underlying reasons for autism remain.” He still follows a gluten- and dairy-free diet.
Romaniec continued her involvement with the group as it grew exponentially. By 2002, there were three chapters; today membership has grown to 45,000 families with chapters in 22 states. An average of 600 families join every month. She moved to Grafton in 2004 and serves as the Massachusetts Chapter coordinator, recently returning from a TACA conference in California. TACA now has over 500 people involved in Massachusetts.
She has become a parent expert, sharing her knowledge and experiences in magazine articles, radio interviews, and statewide coffee talks. She attends national conferences and is planning to go to both Chicago and Denver this summer. She continues her mentoring mission and educational advocacy, but considers her consistent support to families in crisis and parents who are starved for answers as her primary mission.
In a few months, Romaniec will publish a book titled, “Victory over Autism: Empowered Parents, Recovered Children, Saved Children.”
In it, she states her belief that “Kids can get better and live to their highest potential. Families can get better and relieve some their underlying stress.”