Following three to four years of dealing with infertility issues, Gail Ellis and her husband decided to explore adoption options. Following this decision, the couple began a process of looking at agencies, working with agencies, going through training and then a waiting period.
"The birth mother chose us one week before our son was born," Ellis said. "We were on our way out of town, so we agreed to do our interview. She actually was in labor, and we met our match early in the morning and he was delivered late in the afternoon."
The couple, overjoyed to finally begin their journey as parents, took their new son home with them when he was three days old under protective foster care. The adoption was finalized when he was 11 months old.
The paperwork provided by the child's biological mother did not indicate use of illegal substances or alcohol during the pregnancy and indicated only a small amount of smoking tobacco. The infant received an Apgar score of eight immediately following birth, suggesting good health and normal function. The pediatrician agreed that all seemed well with the child.
As time went on, Ellis learned more of her son's birth mom and of the illegal substances common in the home.
"Probably about the time our son was 12 months old, I went to the pediatrician and said, 'You know, I really think something's going on here,'" Ellis said. "And this is a common thing with many moms and the mother's intuition thing says, 'Certainly this is my first child ... but this does not look like the other kids I see when I go to the mall, or a play area or a restaurant.'"
Ellis said she noticed that her son was never quiet; he loved to make verbal sounds and buzzing his lips. Naps and bedtime were never smooth and both required a very strict routine to be fruitful.
If the routine was interrupted, the couple had to start it over to get their son to sleep. When he did sleep, it was never for more than two hours at a time. This sleep pattern continued until her son was 8 years old.
"That makes you a pretty fragile parent," Ellis said.
Because of the invisibility of the problems to the naked eye, Ellis felt like few truly took her son's symptoms seriously.
"The implication is always ... 'there's nothing wrong with these kids, these people just don't know how to parent them,'" Ellis said. "That happened several times and that's painful, that's embarrassing, when you're doing everything you can — putting all your resources in. He was getting up every two hours, plus he needed 24-hour one-on-one supervision ... there is limited to no respite.
"In essence, if a child had a physical disability or a catastrophic illness, let's say they were in the hospital for treatment 24 hours per day, I counted up that there would be 25-30 people involved in supporting that child 24 hours a day ... When we recognize a child that is ill and has been impacted by something, there's this tremendous system with a visible medical diagnosis and hopefully physical diagnosis.
"As parents, we were out there waving our arms. Luckily, sometimes there's one lifeguard. Often times, that can be a mental health person or developmental disabilities person who gets it, or maybe if you're really lucky it's both. And they can help you try to plan your life."
After trying to get an accurate diagnosis and intervention on multiple occasions, the Ellis' were finally successful when their son was 17 years old. Upon visiting with Dr. Wesley Jones at the Flint Hills Counseling and Consulting Clinic in Emporia, he was diagnosed with Fetal Alcohol Syndrome.
Amanda Cunningham, a licensed master's level psychologist, explained more about why Fetal Alcohol Spectrum Disorder, or FASD, is often overlooked.
"Physicians might overlook symptoms of FASD due to the oppositional and academic concerns that are presented," Cunningham said. "If facial features are absent, then the signs and symptoms that are present are not typically what a health provider deals with.
"These signs and symptoms would include non-compliance, impulsivity, risky behaviors, substance use, poor social skills, etc. They also include difficulty in school, often with lower IQ’s and poor school performance. At first look and without asking important historical questions about mother’s use of alcohol while pregnant, these symptoms can be linked to ADHD, Oppositional Defiance, Bi-polar, Asperger’s, as well as some others. Other signs and symptoms would include abnormal appearance (smooth philtrum, thin upper lip, small palpebral fissures), short height, low body weight, small head, poor coordination and problems with hearing and seeing."
According to SAMHSA's website, "Some infants with an FASD may also have tremors, seizures, excessive irritability, and sleep problems," which explains the problematic sleep habits that Ellis' son exhibited.
"The damage to the brain can span across a continuum of large to subtle impairments, depending on the amount, timing and frequency of the exposure," Cunningham said. "The severity of the damage depends on how much was consumed during what part of the pregnancy.
"Results of brain damage can impact achievement and learning disabilities, poor impulse control, poor personal boundaries, poor anger management, developmental delays, and poor attention or concentration. It can also cause slower cognitive processing, poor judgment, difficulty with expressive or receptive language, poor short term memory, difficulty with motor skills, poor sensory processing and an inability to read nonverbal cues."
Cunningham added that women who consume alcohol while breastfeeding can also affect their child's developing motor skills and sleep habits. Children with FASD also often struggle with addictions later in life as a result, among other issues.
"They are at high risk for many things: suspension from school, trouble with law enforcement, substance use, inappropriate sexual behavior, mental health issues, unemployment and an inability to live independently," Cunningham said. "Unfortunately, traditional forms of substance abuse treatment may not provide the support or interventions necessary for people with FAS to overcome the addiction."
Ellis' son is now 22 years old and living without his parents' 24-hour supervision for the first year. He has obtained a driver's license and is able to hold a part-time job.
"It's impacted our physical health, it's impacted our relationships with our neighbors, our son's been ostracized," Ellis said. "It can create, on the worst side, a loneliness, a tremendous physical challenge, a tremendous emotional challenge because you're to be a calm anchor for your child without respite time or time away.
"It is zero, zero alcohol if you are planning a family, if you think in any way you might be pregnant, if you are pregnant, zero alcohol from conception forward."
If a child is exhibiting symptoms similar to those presented with FASD, Cunningham suggests approaching a primary care doctor first.
"Often times, the primary care doctor is the first place people seek help, which is very appropriate," Cunningham said."With a thorough assessment and an understanding of the FAS diagnosis, the physician can help direct the family to other resources. Mental health services should also be sought out to help with developing intervention skills, understanding of the diagnosis and symptoms as well as processing the impacts of alcohol use while in utero.
"Emporia offers the only FAS screening clinic in the state of Kansas. They can contact myself, Amanda Cunningham, at the MHCECK (343-2211) to request a packet for a referral. They do not have to be referred from another agency. The Clinic evaluates the clients by utilizing the University of Washington’s model of The 4-Digit Diagnostic Code. This model reviews the client’s growth throughout the lifetime, facial features, brain functioning and alcohol use while in utero. When seen at the Clinic, the person leaves with a diagnosis from the FAS Spectrum and recommendations to take back to their community for future and ongoing care. Our Clinic includes a psychologist, primary care physician, registered nurse, counselor, school psychologist, family advocate and at times various interns and other supporting personnel (speech therapist, occupational therapist, etc)."
Alcohol in any amount can negatively affect a conceptus in the womb because the baby's liver cannot process it. A fact that many forget early-on in a pregancy, no level of alcohol is safe for the unborn. A mother's consumption of alcohol during pregnancy can lead to Fetal Alcohol Spectrum Disorder (FASD), and the potential symptoms are plentiful.
^In a 2013 study, the Substance Abuse and Mental Health Services Administration found that approximately 18% of women in their first trimester drank alcohol within the past month and 6.6% claimed to binge drink during the first trimester.
^If alcohol is consumed during the first six to nine weeks of pregnancy, it can lead to problems with the development of facial features.
^According to the Mayo Clinic, alcohol consumption during the first trimester can cause developmental abnormalities in the organs, bones, and central nervous system.