September 9 is International FASD Awareness Day. FASD stands for Fetal Alcohol Spectrum Disorder.
“This day was chosen so that on the ninth day of the ninth month of each year, the world will remember that during the nine months of pregnancy, a woman should abstain from alcohol,” Frontier Regional FASD Training Center writes. “The first awareness day was celebrated on 9/9/1999.”
A decade and a half since the first FASD Awareness Day, awareness is dauntingly scarce. Though a Google search about FASD will turn up nearly endless stories of struggles for individuals well into adulthood, most people have no real understanding of this completely preventable, lifelong disability.
I am the non-biological mother of a child with FASD. My child’s birth mother drank an undisclosed amount of alcohol during her pregnancy. I started caring for him when he was about 1-and-a-half-years-old. When I got married, I became the full-time caregiver for my stepson. Until then, I had no idea of the hardships a child with FASD faces, nor of the impacts the disability has on the entire family unit.
The leaflets and pamphlets about FASD explain that drinking during pregnancy can cause cognitive impairments on the unborn child that last their entire lives. They also list things like physical disabilities, language delays, social impairments, and behavioral issues. Those are all just words that I thought I understood. NIH released a statement about FASD this week, but it too was void of the actual hardships our kids face.
A fellow caregiver of a child with FASD explained a situation that described just one small but impacting aspect of the disability.
“He had a fall on the playground in his first week at school. He bounced back up and kept going so the folks watching just assumed he was fine. He was not. He had broken his nose. When they came back into class 20 minutes later and saw the swelling and bruising they finally took him to get some ice on it but when he insisted it didn’t hurt they let him go back to class,” Tina Andrews told The Inquisitr.
Her son doesn’t feel pain the way neurotypical children do. “It was 5 hours before I knew what had happened, during that time normal bacteria that you would find inside a nose had migrated through an internal tear in the tissue into the skin under his eye. Within two days he had a nasty festering infection swelling up between his nose and eye.”
Andrews explained how after the school’s lack of awareness about FASD let her son down, a specialist’s lack of awareness compounded the problem.
“The ENT surgeon we took him to drained the infection, but did not put any kind of dressing on it, in spite of being told that my 5 year old was really more like a 2 year old and would never be able to keep his fingers away from the incision,” Tina recalled. “The infection reoccurred, only this time it was MRSA,” she said, explaining that her son had probably picked it up by touching everything he could at the hospital.
Tina’s son’s infection traveled into the damaged cartilage and quickly turned into Osteomyelitis. It took over six months of antibiotics and five surgeries to fix the school employees’ and ENT’s errors in judgement, Tina said. She believes her son’s pain could have been avoided if more people were aware of the reality of FASD.
As Tina touched on, a child suffering from FASD often has a tremendously hard time controlling his impulses. Impulses to touch things they shouldn’t, for example, are difficult to control. From my own experience, trying to control their impulses can often lead to even bigger problems.
This is a photo of my son’s first grade class room classroom. He destroyed a lot of it after becoming frustrated over a minor difficulty in class.
The next year, my son entered an online public charter school to protect him from having to fit into an impossible mold and to protect him from harming another child. The meltdowns caused by the brain damage from even small amounts of maternal alcohol consumption are often set off by trying to force a child with FASD to do something he doesn’t want to do or doesn’t know how to do. Those meltdowns, in a classroom, can be dangerous to everyone. This particular school’s employees did learn to remove all the other children from the room instead of attempting to remove him from the room. I have been lucky to have worked with a couple of school districts that would always try their hardest to help him, but for some children with FASD, a regular school just won’t work.
If they had tried to remove him from the room, he could have easily hurt the school staff members or himself. I’ve gotten called by the school after my son bit a parapro at his school and drew blood. She had to seek medical treatment. He has injured teachers and caregivers on more than one occasion.
My stepson is much more relaxed now that he is out of the chaotic setting of a brick-and-mortar classroom. He told me that he is glad he’s not there anymore, because the lights in the classrooms make noise and flicker fast, he said. He said that everything is so loud at school and when he tried to focus, he felt like ants were crawling up his legs. This is not to say he doesn’t throw tantrums outside of school, but a calmer environment with less variables helps tremendously.
Children lucky enough to have been diagnosed with FASD usually get a specialized education plan in public schools, but children who are not diagnosed are usually just believed to be “bad children.”
It’s a dearly held belief in our culture that the harder we work at something, the more likely we are to achieve it. That’s not the case with children with FASD. Children with FASD do better learning more slowly and learning the same things repeatedly before moving onto the next step. Challenging work and working harder often result in a melt down.
“Frustration is not our friend. When we feel like we need to be different than who we are or the people around us don’t understand us or that the harder we try, the more we disappoint you, meltdowns will occur,” Ann Kagarise, an adult woman still dealing with the aftermath of her mother’s alcohol consumption during pregnancy, wrote. “If we know you will allow us to be who we are, that we don’t have to be pounded into a shape that fits for you, then frustration will be down and growth will be off the charts. We want to please! If we know you are not pleased with us, then we are crushed. Our entire being wants to be accepted for the square peg that we are. Square, rectangular, triangular, many shaped forms of FASD.”
Two years ago, on International FASD Awareness Day, Ann wrote an inspiring blog entry.
“This is the ninth day in the ninth month! NINE! This is a day to celebrate who we are in spite of this birth defect! WE ARE!!!!!!! WOOHOO!!!!! NOW…GO–BE PREGNANT–BE ALCOHOL FREE,” Ann wrote. “Oh, would you put alcohol in your baby’s bottle? Would you hook a keg up to your baby’s mouth Well, that is what a woman is doing if they drink while a baby is inside them.”
When the FASD pamphlets say “language delays,” they actually mean a vastly encompassing area of language difficulties. Not only did my stepson’s first words come much later than average, but his language difficulties persist even at eight-years-old. My son takes everything you say literally. My stepson’s teacher said to him, “Wanna go get your coat on?” My son told her, “No.” He didn’t mean any disrespect or sass. She asked if he wanted to. He answered her question. My son takes everything that is said to him literally. He also can’t always find the words he wants to say. It’s not that he never learned the words, but that at that moment, he may not be able to come up with a particular common word. When that happens, his frustration level escalates.
The Inquisitr previously reported that some doctors have stated that light drinking during pregnancy is fine. Meanwhile, the CDC still affirms that there is no known safe level of alcohol consumption during pregnancy.
“What the study authors proceeded to note, however (that the media did not mention), was that the light drinkers in their study had socioeconomic advantages, compared with nondrinkers,” Dr. Tracy, Attending Physician at Vincent Department of Obstetrics and Gynecology and Massachusetts General Hospital, and Assistant Professor, Obstetrics, Gynecology, and Reproductive Biology at Harvard Medical School, wrote of one of the highly-cited studies quoted in the previous article.
Better nutrition appears to have some protective value against drinking during pregnancy, for example. “A sentence I thought was most compelling in their statement was, ‘It is an inconvenient fact of life that alcohol is a teratogen.’ Now, this fact is well supported in the literature,” Dr. Tracy explained. “There are animal studies regarding the use of ‘low-dose’ or ‘moderate’ alcohol in pregnancy that demonstrate adverse behavioral outcomes with exposure to even small doses of alcohol.”
Physical problems involved with alcohol consumption are also a part of FASD. They can include wetting the bed into adolescence, deafness, and vision problems. That’s only naming of a few of the myriad of possible physical problems associated with FASD. FASD also often leads to secondary diagnoses of mental illnesses like bipolar disorder, ADHD, anxiety, OCD, ODD, and more.
Lying and confabulation are a part of many FASD sufferers’ daily struggles. They are a symptom of the disability. This behavior can have lasting social and legal implications. People with FASD are more likely to be used as a scapegoat by criminals, convinced to engage in illegal activities, or admit to illegal activities they never did. Sometimes people with FASD will tell a police officer they committed a crime, simply because it’s obvious that that’s what the officer wants to hear. Fathoming consequences in the moment is difficult for people with FASD. Furthermore, domestic violence regularly has a place within a person with FASD’s life, either as the abuser, the victim, or both. The same goes for sexual violence and other sex crimes.
“I’ve met countless women who say they regret drinking while, their children have life long disabilities that can’t be taken back. I have yet to meet a women who regrets abstaining,” Lara Crutchfield told The Inquisitr.
Lara is a FASD consultant and speaker. She also trains social workers, nurses, and foster parents on the subject of FASD. We need more people like Crutchfield working within schools, hospitals, and the legal system.
Not everyone who drinks while pregnant will end up with a child with a disability, but alcohol is a known teratogen. When alcohol does damage an unborn child, there is no current medical technology to fix it. Medications regularly don’t work as anticipated in people with FASD, and therapy is a very slow, expensive process that doesn’t always work.
September 9 is International FASD Awareness Day, so please pass this information along so that we can help stop fetal damage from alcohol instead of struggling to deal with the consequences of it.
[Featured photo via Sisters of ND Toledo on Twitter]