Exposure to alcohol. This may be the most vague and full-of-unknowns special need you’ll come across in the profiles of children waiting to be adopted. It includes a vast array of outcomes, sometimes including no effects at all. However, many parents jump to an extreme when they first read “alcohol exposure” — thinking, “This must mean they have Fetal Alcohol Spectrum Disorder (FASD).” Or, families nearly skip over it — thinking, “It’s so common… it must not be a big deal.” An informed approach to adopting a child with alcohol exposure lies somewhere in the middle: informed by research, supported by other families’ experiences, and always with the best interests of the child as the deciding factor.
To me,” says Tara Blackshear — recalling when she first read her son Hugh’s profile — “the alcohol was just a one-sentence thing. It just said that his mom drank her entire pregnancy with him. I didn’t think anything about it.”
She consulted medical professionals, and even they didn’t seem to think much about it. But at the urging of Holt, she decided to research. Tara learned that alcohol exposure could be nothing, or it could be something worth preparing for.
Some studies show direct physical and neurological effects based on the exact day that alcohol was consumed during pregnancy. But without knowing these exact details from a child’s birth mother, it’s nearly impossible to know what the outcome will be. If a child has prenatal alcohol exposure, there is usually a 50-percent chance that he or she will experience symptoms of FASD — and a 50-percent chance he or she will have no symptoms at all. What makes alcohol exposure such an unknown is that the symptoms — whether minor or significant — usually only become evident once the child is school aged.
But as Tara and her husband, Lee, learned more about the potential risks and made an action plan for each potential symptom, they felt confident moving forward.
Although most kids show symptoms later, Tara and Lee did notice some minor differences with their 3-year-old son, Hugh. They recently decided to have him tested, and he was officially diagnosed with mild FASD — a diagnosis primarily based on his known prenatal exposure and some physical characteristics. Hugh’s diagnosis does not include any neurological or developmental setbacks.
But no matter the diagnosis or what the future holds, the Blackshears are committed and prepared to provide Hugh with whatever he needs to thrive.
“There’s no doubt about it that he has ‘Hugh quirks’ and we have to parent him differently,” Tara says. “But we parent him with all we have.”
Tara recommends other parents do the same.
“I say for parents considering a child with [alcohol exposure], it’s OK to be scared,” Tara says. “There’s a lot of unknowns and the known behaviors can be scary. But research ways you’re going to help your child once they come home. It’s important to know what speech, behavior, occupational, physical and counseling therapies are available in your area.”
More than anything, she recommends talking with other parents of children with alcohol exposure or FASD. For the Blackshears and many other families, Amanda and Reid Genuchi proved to be the best resource.
When they were in the adoption process for Elias, the Genuchis didn’t know what — if any — effects of alcohol exposure their son would experience. But months after bringing him home, they learned his symptoms are on the more extreme end of the spectrum. Today, 6-year-old Elias experiences many of the symptoms common to FASD: impulsivity, hyperactivity, sensory issues, learning and cognitive delays, memory and processing issues, and social interaction challenges.
“We love Elias more than life itself,” Amanda says. “He has brought more joy into our lives than we could have imagined. But FASD is hard — for the affected individual and the family.”
To best meet his needs, Amanda and Reid homeschool Elias, and while there are no FASD-competent professionals in their area, they are committed to providing him with the resources he needs to achieve his fullest potential.
“I never want Elias to be ashamed of having FASD or to think he is a disappointment in some way,” Amanda says. “He is truly a blessing and the light of my life. It is my honor to walk with him through life, and I pray each day he knows how loved and wanted he is.”
Her biggest piece of advice is the same as Tara’s: research and talk with experienced families.
Following this advice is what helped Cassie and Joe Brooks in their decision to adopt their daughter, Emma. “FASD seems huge, and there are so many things to prepare for,” Cassie says. “But when we broke it down into those small aspects to prepare for, some didn’t seem big. But others did, and that’s what we focused on.”
Emma had significant prenatal alcohol exposure, and it is still unknown whether or not she will experience any symptoms. But throughout their adoption process, Cassie and Joe focused on preparation. They researched the FASD symptoms that seemed daunting, and consulted professionals.
“I think the biggest thing was hearing the real, possible outcomes from the pediatrician,” Cassie says. “We sat down and went through the entire file with her. We talked about the prospects and said, ‘OK — are we OK with this? Can we do this? Is it OK if this happens?’”
The biggest hurdle for the Brooks was processing how to help their daughter if she experiences the inability to understand cause-and-effect — one possible outcome of FASD. But instead of worrying, they brainstormed the therapies and parenting strategies they would use to help Emma if she needed it.
“It just didn’t seem as scary once we really sat down and thought about how we could help her through that,” Cassie says.
In the end, alcohol exposure is not too different from any other special need you may be considering. Do the research, determine if you are equipped to care for the child’s possible needs, and prepare. Most of all, children with exposure to alcohol need parents who will be their advocate, be flexible and love them unconditionally.
“I’m understanding of the fact that our parenting road may look different than others,” Tara says. “But with research, resources and prayer in my back pocket, I know parenting a child with fetal alcohol exposure is something I can do.”
*Some names changed for confidentiality
from Dr. Eckerle and Dr. Gustafson
Judith Eckerle, MD, is an associate professor of pediatrics at the University of Minnesota and is the director of the Adoption Medicine Clinic. Kimara Gustafson, MD, MPH, is an adjunct assistant professor of pediatrics at the University of Minnesota and a doctor at the Adoption Medicine Clinic. Both Dr. Eckerle and Dr. Gustafson are Korean adoptees and work with adopted children and their families, with a special focus on alcohol exposure and FASD.
If a child has exposure to alcohol, does this always mean that they have FASD?
No. Most alcohol-exposed kids will not be on the FASD spectrum. The issue is that, when they are young, we do not know if they will be more or less affected.
What does it mean that FASD is a spectrum?
This means that there are kids and adults who are mildly affected, and there are others who have more severe impairments. Some actually have minor or no long-term effects. We see a range of difficulties with attention, memory, learning and behavior, which may be apparent early on in a child’s life, but also may not be seen until a child is transitioning into adolescence. These behaviors can often be misinterpreted, misdiagnosed as ADHD, or the child can be inappropriately labeled as “not listening, not able to focus, forgetful or willfully disobedient.” A child may not realize that what they are doing is wrong or quite fully understand how their actions impact their surroundings due to the fact that their brain processes things in a different way.
What are the greatest misunderstandings surrounding FASD and alcohol exposure?
People sometimes have an older “picture” that all people with FASD are severely impaired, which is simply not the case the majority of the time. In the same way we view ADHD or autism, an FASD diagnosis means the brain is just wired differently and the best thing we can do is better understand how they see the world and help them move forward at home and at school.
What do you suggest for families considering adopting a child with prenatal alcohol exposure?
Families who are considering adopting an older child may have some good information about the child’s current level of functioning. But in younger children, it’s a leap of faith to see how they develop with the help of a supportive home and intensive intervention services. The earlier we can diagnose and intervene, the more possible it will be for the child to reach their fullest potential. Counseling from professionals both before and after the adoption can help families determine the level of risk and services expected for a particular child or exposure.
How should families prepare for parenting a child who has had alcohol exposure?
Start with a good medical home, meaning a good pediatrician or medical provider — ideally, someone who is familiar with adoption, developmental and behavioral interventions, and prenatal exposures. In addition, the child may need occupational therapy, physical therapy or speech therapy evaluations. The family may also be helped by mental health professionals, parent support groups, and local and national resources like MOFAS/NOFAS.