Facing the Reality of a Fetal Alcohol Diagnosis

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Raising a child with a fetal alcohol spectrum disorder involves dealing with a range of emotions, embracing faith and cultivating a community of support.

Knowing what we know today, it’s hard to imagine why some mothers-to-be drink or take drugs while a little one is growing inside them. Many women, however, don’t realize they’re pregnant, particularly in the first four to six weeks. Others, ensnared by drug and alcohol abuse, or suffering from mental illness, may lack the awareness to care for themselves or their baby. And still other women rely on faulty information that claims women can safely drink in moderation throughout their pregnancy.

Nevertheless, both the Centers for Disease Control and Prevention and the National Institutes of Health urge women to avoid any alcohol while they’re pregnant or trying to get pregnant. Alcohol can pass through a woman’s blood and into the baby through the umbilical cord, interfering with the rapidly dividing cells working with God-given precision to form a human being.

For those parents who’ve either given birth to or adopted a baby with the physical, cognitive and intellectual symptoms of fetal alcohol spectrum disorder (FASD), the question remains: What now?

“Start with your pediatrician,” says Annelise Spees, M.D., a board certified behavioral pediatrician and member of Focus on the Family’s Physician Resource Council. “Somehow get it across that you’re struggling or feel inadequate for the task.”

Dr. Spees says your pediatrician might refer you to a specialist, and notes that each state offers free FASD assessments for children up to age 3. The National Organization on Fetal Alcohol Syndrome, which lists Spees as a referral physician for the state of Colorado, is a good place to start gathering information.

Once you’ve received an FASD diagnosis, a range of emotions may kick in – including guilt, sorrow and fear.

“Moms blame themselves and rethink every aspect of their pregnancy,” says Dr. Spees. An FASD diagnosis, she says, is in many ways a type of grieving process: “There’s an imaginary baby you give birth to and everything is fine. Then you actually give birth and there’s a problem, so you go through the mourning process of that ‘perfect’ baby. It’s like a death.

“You have to get through and go beyond and say, ‘This is the baby I do have, these are the baby’s strengths and difficulties, and I’m ready to love this child no matter what.’ ”

The scenario, she explains, is similar to the one that plays out with many adoptive parents. “They go in with a rosy view, and then face the harsh reality of parenting child with special needs. They may say, ‘This isn’t what I signed up for!’

“They have to bury the image they had of themselves as this perfect parent and this perfect child, and move on. They need to get to the point where they say, ‘This is who I am and these are my limits’ – and then find help with parenting skills and emotional and faith support.”

Embracing Faith, Finding Community

Someone once said that raising children with special needs takes special parents – parents whom God has especially equipped for the task. But many of the parents who bear this burden don’t always feel particularly special or equipped. 

Raising a child with FASD or one coming out of drug withdrawal is heroic work, and not for the faint of heart. Many of these parents draw strength from their faith, while others say they don’t know how people can handle the task without it.

“I did not have a daily walk with Jesus,” says Jodee Kulp, the mother of a now-adult daughter diagnosed with fetal alcohol syndrome. “I had a minute-by-minute walk. You know those seasons of life where you’re attuned to God because you’ve been pulled out of your normal? These kids put you in that kind of need 24 hours a day, 365 days a year. Liz brought me to my knees.”

Today the executive director of Better Endings New Beginnings, an advocacy and virtual support group for families and individuals living with FASD, Jodee says gathering a supportive community around your family is vital. While many find that support at church, those parenting kids with special needs also know that finding others who accept your behavioral and cognitively challenged child can be a frustrating, lonely and even infuriating process.

“We were part of a little church with stable, strong Christian people,” says Jodee. “[But] my daughter at 2 years old was not a little girl who was going to be accepted under any circumstance. I couldn’t parent her the way they thought I should parent—I would have destroyed her.”

Jodee, her husband, Karl, and Liz eventually found a place that incorporated individuals with disabilities into the life of the church: “People felt welcome. If they had to get up and move, make an unusual noise … it all flowed together.”

It’s through this church that the Kulps found acceptance and support. The Kulps had to think outside denominational boxes and what they were used to. The church they eventually found received their daughter wholly for who she was as a human being.

“They sat with us at potlucks, invited our daughter to their homes, allowed their children to come to ours,” says Jodee. “They would defend our daughter if she needed it.”

Dr. Spees offers special words of wisdom to those parents who’ve adopted a child with FASD: “God knows more about your child before they were born and what was going on with past generations. Ask Him for wisdom with what to do. You don’t know, but He does.”

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