When Loretta Grace’s son, Thomas, received a diagnosis on the autism spectrum last year, she wasn't shocked. She had suspected that her then 4-year-old had delayed development but didn’t know why. What upset the Woodbridge mother were the reactions from people she told.
“The diagnosis was a relief. What really broke me up was when I told a childhood friend, and her response was, ‘I’m sorry,’” Grace says. “I thought, why are you sorry? Thomas is not sick. He can learn. It’s not a bad thing. It just means he sees the world differently and struggles with social cues.”
Complicating her days were the well-intended friends and family members who suggested stronger discipline could “fix” Thomas and those who stared when Thomas acted out in public.
When a friend suggested she contact Mom2Mom (877-914-6662) – a 24/7 peer-support helpline for mothers of children with special needs directed by Rutgers’ University Behavioral Health Care – her life changed.
“Even though the counselor and I weren’t talking face to face, we had an instant connection,” Grace says. “I knew right then that there is hope, there is help. Not only is my son going to be okay, but I’m going to be okay.”
Her peer counselor, Dawn Dreyer Valovcin, whose sister has cerebral palsy, encouraged Grace to attend Mom2Mom support group meetings. “At the first meeting, I told my story and spent the rest of the time crying,” Grace says. “When I walked out an hour later, my life had changed. I felt like a weight had been lifted. Having a support system like Mom2Mom is how I can take care of myself. Now, whenever I see a mom of a special needs child who is struggling, I give them the helpline number.”Although mothers who’ve connected with Mom2Mom have children with a variety of physical and mental disabilities and diseases – such as seizure disorders, Down syndrome and cancer – the majority, like Grace, have autistic youngsters.
Mom2Mom provides what for many appears to be an essential lifeline to help mothers care for their own mental health. Through a partnership with the New Jersey Department of Children and Families, the helpline and related services are available to New Jersey parents of children with special needs. Their calls to Mom2Mom are answered by mothers of special needs children who have been trained as peer counselors.
Mom2Mom – the only such helpline in the nation – was launched by program director Cherie Castellano in late 2010 based on a “reciprocal peer support” model: the idea that people with similar experiences can assist each other. “When we can, we match the callers with peers whose children have similar disabilities and issues for ongoing peer support follow-up,” Castellano says.
To date, Mom2Mom has made more than 47,000 contacts with caregivers through calls, live chats on its website and support groups. Though mothers reach out primarily to address a need of their children, during the course of these discussions the counselor will ask, “How are you?,” turning the conversation to the mother’s own mental health.
“They want to appear as ‘supermoms’ – being able to balance all of their appointments and challenges and emotions,” says Castellano, who cites family issues, depression, school stressors and finances among the other chief concerns these mothers have. “They don’t want to seem like they’re sad or afraid.”The helpline also reaches out to women who have fewer opportunities for assistance, such as mothers of adult children with disabilities who have “aged out” of the system and members of the Spanish-speaking community.
Silvia San Lucas of Newark is one parent who has benefitted from the call center. “It’s not as easy for us to express our exact feelings in English,” says San Lucas, mother of a 17-year-old autistic son with multiple disabilities. Lucas, who is both a caller and a member of the Mom2Mom Spanish-language support group, says it makes her happy when her counselor calls to ask how she is feeling. “People don’t ask me that often,” she says.
Her peer counselor, Kirssy Ying – a native of the Dominican Republic who has six children, two of whom are autistic – can identify with the parents whose first language is not English. She learned English when her second daughter was diagnosed. “It is difficult to understand that your child has special needs, but it feels so much worse when you are unable to express your feelings and concerns. The benefits of the group go beyond language – it’s also about understanding the mom’s culture.”
When matching callers with peers, coincidences are certain to surface – none more surprising than in the case of Robin Fox of Millstone and her peer counselor, Donna Icovino, who discovered their relationship went back further than they thought. Fox is the mother of 24-year-old triplet sons, two of whom are autistic. One of the young men exhibits severe aggression. Icovino is the mother of a 28-year-old son who is affected by autism and bipolar disorder.“I went to a support group and I thought her name was familiar,” says Fox. Rummaging through old paperwork, she discovered she’d spoken with Donna 20 years prior. “The clinical psychologists who diagnosed my sons had diagnosed Donna’s son years earlier,” Fox recalls. “They gave me her number to call if I started to feel overwhelmed. It was the best call I could have made.”
Reunited through Mom2Mom, Icovino and Fox now stay in touch regularly. “It’s comforting to talk to someone who is in my shoes but one step ahead of me,” Fox says. “Whenever I feel like I’m going crazy, she calmly tells me what I’m doing right and what I need to do next.”