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by Teresa Mills-Faraudo
When Helen Smolinski’s daughter, Betta, was born with severe disabilities, she needed someone to blame. First it was the sperm donor. Then it was herself.
But then her partner made her realize they needed to accept and love their daughter for who she is, and blaming people wouldn’t help.
Now 22-months-old, Betta has seizures and difficulty with hearing, eating, holding her head up, crawling and even reaching for her parents when she’s crying. Her twin brother, Jerzy, has no abnormalities.
There are many parents who are coping with the birth of a disabled baby. According to data from the Centers for Disease Control and Prevention, about one in six children in the United States had a developmental disability in the years 2006-2008.
It can be more difficult for parents when a child is born with a disability than a child being diagnosed later in life, says Trudy Grable, director of community services at Parents Helping Parents, an organization that offers support for families of children with disabilities.
“You really build up in your head what that child is going to be, and that dream is shattered,” she says.
• Allow Yourself to Grieve
Coping when a child is born with abnormalities is different for everyone, says Mary Ellen Peterson, CEO of Parents Helping Parents which offers a six-week support group program.
“It’s okay to be in denial in the beginning,” says Carol Cohen, family health liaison for the Family Resource Network of Alameda County, whose adult son has disabilities. “A lot of denial got me through it. It’s a way to get up in the morning and keep going.”
• Focus on Your Needs
It’s important for parents to focus on taking care of their own needs, says Emily Perez, a clinical social worker who meets with families in the neonatal intensive care unit (NICU) at Lucile Packard Children’s Hospital at Stanford. It’s also important to recognize the needs of any young children at home, Perez says.
One of the biggest mistakes Smolinski says she made was isolating herself while Betta was in the hospital. At Packard Children’s Hospital, Perez says, they have trained parent mentors for parents like Smolinski.
• Educate Yourself
Often, when a child is born with a disability, parents will talk to a clinical geneticist about the diagnosis. Juno Duenos, director of Support for Families of Children with Disabilities, says to be cautious when educating yourself. “There is a lot of misinformation out there. It’s good to have people in the community, like family resource centers, who you can talk to.”
Teresa Mills-Faraudo is an associate editor at Bay Area Parent and mother of two.
Family Resource Centers Network of California.
Parents Helping Parents.
Support for Families of Children with Disabilities.
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