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This is what it is like raising children with an FASD from a parent’s perspective. I am not a licensed professional. The Statistics I reference can be found on the Pr%f Alliance (formerly MOFAS) website.
I am a parent of two children that I adopted from foster care as newborns. They are currently 19 and 16. Here is what I have learned about Fetal Alcohol Spectrum Disorders. These are my personal experiences raising children who were exposed to alcohol in the womb.
Fetal Alcohol Spectrum Disorder (FASD) affects approximately 1 out of every 20 children in the US. Drinking alcohol during any stage of pregnancy can cause irreversible brain damage that may result in lifelong disabilities and FASD cannot be cured. FASD is the number one cause of brain damage and it is 100% preventable. Approximately 90% of the children in foster care are removed from their homes due to parental abuse and neglect most often resulting from addiction. 80% of the children in care have been prenatally exposed to alcohol. Despite these appalling statistics, this disorder does not just affect children in foster care. 50% of the pregnancies in the US are unplanned and women often do not know they are pregnant until about 6 weeks along. Children from every ethnic background and socioeconomic status are affected. Alcohol is cheap, readily available and legal. Alcohol is served at most celebrations, rituals and holidays in the US. We drink to relax after work and we drink with meals. Just one binge can cause FASD. A binge for an average sized woman consists of 4 drinks consumed in a short period of time. Just 4 drinks consumed during a night out can cause severe, lifelong, permanent brain damage. Drinking any amount of alcohol including just one drink a week during any stage of pregnancy can result in an FASD.
Most alcohol education programs taught in high school and college do not include FASD prevention training. Birth control is not used as consistently or effectively when one is drinking. There is a vicious cycle. Drinking and failing to use birth control can result in an unplanned pregnancy. The mother is unaware she is pregnant for often, 6 weeks and she continues to drink casually during those early weeks. Once she confirms a pregnancy she might stop drinking for the duration but unfortunately, the damage has been done. It often takes years of misery and misdiagnosis of her child before she remembers that she drank during those first weeks of pregnancy and by then, the shame prevents her from ever disclosing. Her prenatally exposed baby might live with significant disabilities their entire life never having been appropriately diagnosed.
Physician training programs rarely provide more than one or two lectures to educate future doctors on how to diagnose and care for children and adults with an FASD. Parents are often more informed about FASD than their child’s physician and this leads to years of the wrong diagnosis and blaming parenting instead of brain damage. All the hard work to learn how to parent a child with an FASD is often for nothing when a school district fails to train their teachers and therapists about FASD and how to educate differently. Children with FASD are often targets of student and adult bullying at school.
The lack of understanding and constant misinformation is due in large part to the alcohol industry. Their lobbying efforts are as powerful as the NRA. They have resorted to similar tactics as Big Tobacco however no one has ever held them accountable. I recently heard a PSA from a tobacco company that was caught marketing vaping to children. They were forced to own up to their illegal activities on TV. The alcohol industry sponsors research then they either bury unfavorable results or alter them to ensure billions in revenue to continues to flow into their pockets.
As a parent of two children with this incredibly hard disorder, I find the Alcohol Industry’s silence about the poison alcohol really is to a developing fetus heartbreaking and inexcusable. The alcohol industry ensures that alcohol remains part of celebrations in our culture. When Big Tobacco was outed for lying about the addictive nature of nicotine and the astronomical cancer rates, behavior changed. There are far fewer smokers now and they are prohibited from smoking in most public places and all public transportation. The dangers of drunk driving and strategies to prevent it are widely known. Bike helmets were invented and laws were enacted to ensure children wear them. Statistics on lives saved by wearing seatbelts were publicized and laws were enacted to require them. Airbags are standard equipment in every passenger vehicle. Safety is always first except when it comes to alcohol.
Women alter their behavior during pregnancy. They take vitamins, stop coloring their hair, quit changing the cat litter box, switch to low heels, skip the hot tub, and take fewer physical risks. When it comes to alcohol many pregnant women don’t realize they need to stop drinking completely before and during their entire pregnancy. Some women that do know they need to abstain often expend significant effort to justify having a drink a week. Sadly misinformation continues to come from physicians.
Unfortunately, Fetal Alcohol Spectrum Disorder is not considered an actual medical diagnosis. FASD has made it to the appendix only in the Diagnostic and Statistical Manual of Mental Disorders (DSM5). Fetal Alcohol Syndrome (FAS) the most seriously affected classification is a medical diagnosis. Children with FAS are the most severely affected by prenatal alcohol exposure. FAS usually includes an intellectual disability.
Far too often medical professionals rely on facial anomalies to diagnose FASD. Only 10% of children with an FASD actually have facial anomalies. Mac is on the spectrum and his facial anomalies were detected by a computer program. None of his physicians ever noticed. He has a typical IQ. Miss Bee has the full syndrome and her facial anomalies are obvious. She has an intellectual disability and will always be my dependent. Facial features form during days 19, 20, and 21 of pregnancy only. If the mother does not drink on those 3 days the face will most likely develop in typical fashion however the child may be severely affected. A child can have facial anomalies but be mildly affected. FASD is one of the only disorders where physicians require written proof of drinking during pregnancy (mother’s social habits) to even consider FASD.
Mac was born a healthy weight and his toxicology was negative. He reached all of his developmental milestones on time or early. In hindsight there were signs but they would have only been noticeable to an FASD informed professional. By age 5 there were obvious problems but he was not diagnosed with an FASD until age 15. Despite his DCFS social worker having worked with his biological family for several years she failed to inform me about his prenatal exposure to alcohol. The placement papers I received when the adoption process began were blank. Extensive FASD training should be included in foster care training. DCFS broke the law by failing to have my children evaluated before adoption. If there is known parental drug and alcohol abuse or mental illness an evaluation is required.
Miss Bee was born with positive toxicology and I was informed, however, it was not alcohol that was detected. Alcohol causes more damage to a developing fetus than cocaine, meth, and marijuana combined. Despite visible facial anomalies every medical professional and social worker missed the signs and symptoms. Her placement paperwork was detailed and extensive but I could not get any professionals to actually read the documents. Finally, at age 8, she was diagnosed with FAS. I spent years trying to figure out what was wrong. So many mistakes were made most of all by me. A child with FASD requires different parenting and educational strategies. When I teach classes, consult and do advocacy work, I call it throwing out the traditional parenting handbook and replacing it with the FASD handbook.
By shining a light on this incredibly difficult invisible disability I hope to help other parents and caregivers live a full life with happy moments and travel to balance the hard.
