Finding Help for Children With Fetal Alcohol Spectrum Disorders
Finding support in North Carolina
The Brantley Family
The combination of having four older children and experience working in early intervention with children who have developmental delays gave Becky and Anne Brantley of Zebulon a toolbox of parenting strategies by the time their son, Demonte, whom they fostered and adopted, came to live with them. Yet the longer he was with them, the more Becky and Anne realized their toolbox wasn’t as effective with Demonte as it was with the other children.
He was incredibly hyper and would have “really intense tantrums that lasted for hours and occurred multiple times a day,” Becky says. “And none of our really good strategies that work on other kids were working with Demonte to help modify his behavior. And so that, for us, was one of the biggest signs that good, sound, developmentally appropriate strategies didn’t work.”
While at a conference for foster and adoptive parents, the Brantleys attended a talk about Fetal Alcohol Syndrome, and it reminded them of Demonte. After consulting with the Fullerton Genetics Center in Asheville, Demonte was diagnosed with FASD, a fetal alcohol spectrum disorder. The diagnosis was the first step in finding new strategies to help their son.
FASD is an umbrella term that describes multiple diagnoses resulting from exposure to alcohol in utero. According to the Centers for Disease Control and Prevention, 6-9 out of every 1,000 school-aged children have FAS, and experts estimate that 2-5 percent of children could fall somewhere under the larger FASD umbrella.
A diagnosis of full FAS involves certain facial features, growth deficiencies and central nervous system abnormalities, says Dr. Yasmin Senturias, M.D., of the Developmental and Behavioral Pediatrics of the Carolinas Charlotte at the Carolinas HealthCare System. For all disorders on the spectrum, neurobehavioral problems are the common feature, she says.
“Alcohol (exposure in utero) affects different parts of the body, but very importantly the brain,” she says. “Sometimes (people with an FASD) look like they have behavior problems, but the truth is that they have true brain problems which create difficulties in the way they cope to the environmental demands.”
Children with an FASD exhibit impaired neurocognitive functioning, self-regulation and adaptive functioning, Senturias explains. In other words, a combination of some or all of these characteristics affects children with FASDs:
- Lower IQs
- Poor executive functioning (or poor planning, organization and problem-solving)
- Lower academic achievement
- Memory problems
- Difficulties with visual and spatial reasoning
- Outbursts and tantrums
- Trouble paying attention and controlling impulses
- Impaired communication, social and motor skills
Many children act much younger than their age, Senturias says. Some experts estimate their adaptive developmental age is the equivalent of half their chronological age. Because of their neurobehavioral disability, they may respond inconsistently to their environments depending on the day. These are lifelong challenges for individuals with FASDs and their families.
Ellen Corona of Apex has seen that with her adopted adult son, who was exposed to alcohol in utero. Daily functioning and social interactions are difficult for him, and Corona has struggled to find the support their family needs.
“There is more to it than physical features,” Corona says. “It is an umbrella term that affects every aspect of the child’s development.”
The Invisible Physical Disability
Kathy Hotelling, a therapist who lives in the Triangle and works with families of children with FASDs, knows firsthand what the experience of managing developmental delays associated with a FASD is like. Her daughter, whom she adopted at 4 months of age, was diagnosed with it when she was 10.
Hotelling says she is a proponent of the “neurobehavioral approach,” which emphasizes that “the child is not the problem, the child has a problem” and if the child is acting out, he or she is communicating “something that they can’t put into words.” Rather than expecting the child to cure the damage to his or her brain, she explains, parents need to alter the environment to meet the needs of their child.
“Just as we would build a ramp for a person in a wheelchair … we need to make accommodations for those with this invisible physical disability,” Hotelling says.
Becky Brantley, who also sites the benefits of the neurobehavioral approach, says the work they’ve done to help Demonte navigate his environment has eased their family’s way, to a point.
“Some days are good days and some days are bad days,” she says. “And some days no matter what you do it’s going to be a bad day. But certainly, the more we have learned and the more we try to apply this knowledge, the more frequent the good days (are), and the bad days decrease. They don’t go away but they do decrease.”
- Pediatricians are a good place to start when seeking a diagnosis.
- The Fullerton Genetics Center in Asheville, a FASD diagnostic clinic where Demonte Brantley was diagnosed. missionmd.org/practice-directory/specialty-practices/fullerton-genetics-center.
- Developmental and Behavioral Pediatrics of the Carolinas in Charlotte. Dr. Yasmin Senturias, M.D., of Developmental and Behavioral Pediatrics of the Carolinas in Charlotte, worked with the American Academy of Pediatrics to create the “Fetal Alcohol Spectrum Disorders Toolkit” to help parents navigate FASD. aap.org (search for “fetal alcohol disorders”).
- Senturias also recommends the “All About Me” booklet from the Bluegrass Prevention Center in Kentucky to introduce people to the needs of a child with an FASD. Download the booklet at kyfasd.org/assets/downloads/AllAbou%20Me_FASD.pdf
- Kathy Hotelling, Ph.D., ABPP, creator of the Navigating Life with FASD website, which helps individuals and families cope with FASD. Her services include counseling, consultations, family coaching and seminars, as well as a free support group. kathyhotelling.com.
- The FASDinNC website has compiled several resources for families. Of particular note is the developing North Carolina Collaborative on FASD, which Becky Brantley co-chairs. fasdinnc.org and fasdinnc.org/fasd-collaborative.
- UNC’s Family Support Program of the School of Social Work is comprised of the university office and 11 other programs throughout the state that provide “information and referral, parent-to-parent support, sibling workshops, support groups, and workshops and training for families and service providers statewide” for families of children “with, or at risk for, developmental disabilities, behavioral disorders or chronic illness.” fsp.unc.edu.
- The National Organization on Fetal Alcohol Syndrome’s website: nofas.org/state-resources-for-north-carolina.
Laura Lacy is a freelance writer in Chapel Hill.