Fetal Alcohol Spectrum Disorder (FASD).
Fetal Alcohol Syndrome (FAS).
Alcohol Related Neurological Disorders (ARND).
Alcohol Related Birth Defects (ARBD).
It’s growing,
spreading,
taking over our society.
An invisible epidemic;
Incurable.
Brain damage.
100 % preventable.
The emotions I feel as I write those words are deep.
Anger.
Pain.
Vulnerability.
Exhaustion.
As the parent of children with Fetal Alcohol Spectrum Disorder this is an issue that has affected me very personally and to be perfectly honest I am just in the very beginning stages of understanding and accepting the realities.
For those of you who may have never heard of Fetal Alcohol Spectrum Disorders (FASD) or are unfamiliar with the definition, here’s a brief explanation:
When a woman drinks alcohol while carrying an unborn child inside her womb, that child’s body and brain are exposed to a very damaging substance.
Alcohol is one of the most dangerous teratogens (substances that can be harmful to a developing fetus.)
Alcohol, unlike other food or drink consumed by a pregnant woman, passes directly from the mother’s blood stream through the placenta to the baby.
Alcohol in the bloodstream constricts the ability of the growing fetus to access oxygen and nutrients. Therefore a baby exposed to alcohol prenatally will not be getting the oxygen and nutrients needed to continue developing at a healthy rate.
This is made even worse if coupled with the carbon monoxide a fetus receives from cigarette smoke. The baby does not have the ability to break down alcohol the way an adult can, so the blood alcohol levels will stay higher for a longer period of time than that of the mother’s.
This means the baby is being exposed to even greater amounts of alcohol for an even longer period of time than the mother.
Alcohol causes cell death and sets in motion a wide variety of disruptions all over the body. The most common affects are seen in the brain and nervous system. Alcohol exposure can also leave behind toxic byproducts on the brain which linger and continue to cause damage.
A child who has been exposed to alcohol prenatally and demonstrates a significant number of effects physically or neurologically is diagnosed with Fetal Alcohol Spectrum Disorder. This is an umbrella term that includes Fetal Alcohol Syndrome and Alcohol Related Neurological Disorders. For the sake of clarity in this post I’ll just be using the term FASD when talking about any alcohol related disorder.
That, in a nutshell, is a description of the invisible epidemic that so many families and individuals are struggling with in our society. Many of these families and individuals are found within adoption and foster care as alcohol use during pregnancy is so often coupled with alcoholism and drug use postpartum which leads to abuse and neglect. Unfortunately trauma affects the brain in many of the same ways as alcohol and compounds the effects, giving the child a “double whammy.”
This is a huge topic and one I can’t even begin to cover in one post, but I’ve made a list of 10 things you should know about Fetal Alcohol Spectrum Disorder. Please take the time to read this. So many families are trudging through the trenches of raising a child with FASD and feeling so desperately alone. It’s hard, it’s exhausting and it’s constant. You can help by being aware of the realities and facts so you can be there to support them.
1) FASD is an invisible disability. By this I mean much of the time you will not be able to see any distinguishing physical signs. Some children will display a slight indication in facial features that most people would not be able to recognize but many have no physical indications at all. Most of these kids look like regular kids with a little extra energy and discipline needed. This, by far, is the most difficult part of having FASD or parenting a child with FASD. Everyone around you will struggle to believe that your child truly has a neurological disorder that limits their abilities…and so will you! A person with an FASD will most likely be incorrectly labelled and judged almost every day of their lives by those around them. A parent will experience much frustration due to others not understanding their child’s very real disability simply because until you are intricately a part of that child’s world he or she will just appear to be a regular kid. This is devastating to the person with FASD, however, because as much as we’d like to ignore their limitations, they are very real! You can only function so long in an environment that does not meet your basic needs. School, home and the workplace will all become places of failure if your disability is not understood and accommodated for. Unfortunately most families living with the reality of FASD will still have some people in their lives who take the stance, “I can’t see it, so I won’t believe it exists.”
2) NO Amount of Alcohol is safe during pregnancy! I cannot even begin to emphasize this enough! Unfortunately there are still doctors who are uneducated regarding FASD and will tell you that small amounts of alcohol are not harmful to your baby. They are wrong! There is no proven ‘safe’ amount of alcohol. This does not mean that every child exposed to a drop of alcohol will be affected by FASD, but it does mean that every child exposed to even a drop of alcohol is at risk for FASD. The effect the alcohol has on the developing fetus depends on many things including timing of consumption, amount of alcohol consumed, development of the fetus and the genetics of both mother and baby. Fraternal twins can be exposed to the exact same amount of alcohol at exactly the same time and still be affected differently because of their genetic makeup. This makes it impossible for anyone to tell you a safe amount of alcohol for you and your unborn child. No amount is safe! This disability is 100% preventable!
3) FASD is an incurable disability. There is no “fix” for FASD. Alcohol is physical damage done to the brain and nervous systems. While the brain can learn new ways to compensate, the actual damage done will remain the same. There will be connections missing for the entirety of the individual’s life. There are medications that may help some children and adults dealing with FASD, mostly to manage the ADHD-like symptoms. There is not, however, a magic pill for FASD. There is no one medication that is going to target all the areas of weakness in a person with FASD.
4) FASD causes impairments in children. Some of those impairments include mental retardation, learning disabilities, attention deficits, hyperactivity, problems with impulse control, language, memory and social skills. These impairments make it very difficult for children to thrive in environments such as school. A typical FASD child will probably: have trouble focusing on tasks, require sensory aids, need constant supervision, have trouble making and keeping friends, have a poor concept of time, find it hard to transition between activities, struggle with anxiety, have poor coordination and balance, find it difficult to work toward a goal, will not learn from their mistakes, have poor judgment, be jittery and hyperactive and display extreme mood swings. Typical behavior also includes habitual lying, stealing and aggressive behavior towards others. All these behaviors are rooted in neurological damage and need to be handled as such.
5) FASD affects the way a child learns; it does not mean they cannot learn! As soon as people realize that alcohol exposure does, in fact, result in physical, irreversible damage to the brain…their first thoughts are that therefore that child cannot learn. This leaves a pretty bleak picture! Children born with FASD’s can go on to be happy, healthy, successful adults…sometimes. The goal is to reach their potential by discovering new ways for them to learn. This takes a lot of hard work on the part of parents, teachers and the children themselves! The world is not geared for FASD, and therefore they are at an acute disadvantage. But don’t give up! These children are smart, talented, funny, and social individuals! Many of them will go on to do very well when given the right tools to accommodate their learning style. They can become responsible, independent adults…but this isn’t always possible. Every child is a unique case when it comes to FASD and so there is really no way to predict what the outcome will be. Depending on the areas of the brain damaged by the alcohol exposure or to what degree, FASD individuals may need structure and supports to navigate their days for their entire lives. Thankfully FASD is starting to become more recognized and therefore more and more resources and supports are available for families, children and adults affected by this disability.
6) FASD is a spectrum disorder. This means that, just like Autism, children affected by alcohol exposure in the womb will present with symptoms all over the spectrum. Every child is a unique case. FASD has a wide variety of faces, making it even more difficult to assess. A child may be very severely affected and present with many symptoms or a child may be only slightly affected and therefore portray only a few of the symptoms. However, this does not mean the symptom displayed is any less severe or that somehow it can be “fixed” since the child does not seem to be severely affected! Remember, this is physical damage done to the child’s brain! Most children with FASD will display a similar set of symptoms varying in severity.
7) Children with FASD find it very hard to control their emotions and behaviour. I know I mentioned this earlier, but I feel these two symptoms are worth going over again since they are so disruptive to daily living. Many individuals with FASD would be able to do quite well in life if it weren’t for their lack of ability to control their emotions and behaviour. Coupled with difficulty understanding consequences and poor judgment, this is a major obstacle! Most children with FASD need constant supervision to ensure the physical safety of themselves and those around them. They are often described as unpredictable, reactive or as one of my daughter’s teachers said, “She’s an opportunist!” 🙂 Unlike most children, these are not traits they will grow out of as they get older, though they may be less noticeable. Structured environments, repetition and self regulation tools can help them learn to moderate their behaviors and set them up to succeed, but on their own they do not have the cognitive ability to accomplish this.
8) Children with FASD have strengths too! Despite the challenges of FASD, many of these children are incredibly lovable, gifted and resilient. They tend to be very social little people. Though they may struggle with social boundaries they can often win over strangers with their affectionate, chatty nature. Even though they can have quite drastic mood swings, they can quickly get over being hurt or angry. One minute they will hate you, but the next they will love you. My favourite is, “Mommy, I love you more than the sun!” Besides being very social these children often have strong visual memories, rich fantasy lives, are very creative and have a strong sense of fairness. They’re energetic and can handle lots of physical activity, making them active, fun kids to interact with!
9) Children and youth struggling with the realities of FASD are vulnerable. Many, many of these children and youths will end up in trouble and charged with criminal offenses due to their lack of self-regulation skills and their tendency toward aggression and violence. Without the ability to control their emotions and responses, they are extremely vulnerable in a society that doesn’t understand or accommodate their needs. A high number of youths in our criminal justice system have FASD. Unless they are backed up by professionals or advocating parents to explain their behaviors and beg allowances and accommodations they will be treated as any other person in our justice system. Even though developmentally they are still a child, they will be treated as adults. Even as children, FASD individuals are vulnerable. Children with FASD often have poor social skills and need the protection of adults around them to keep them safe. They have a very poor sense of judgment when it comes to other people and easily trust anyone who is nice towards them. They will appear comfortable around even a total stranger if given positive attention. They also love physical interaction and will seek it out of anyone who is willing to give it. This makes it hard as a parent to keep children with FASD safe. An important part of parenting a child with FASD is putting into place appropriate social boundaries. This can be hard when the child continually receives positive attention from other well meaning adults when he or she crosses those social boundaries. When children deal with attachment difficulties on top of FASD it emphasizes this and makes it even more complicated.
10) Education is the key! The answer to helping the many children and young adults with FASD is found in being aware of the realities and then advocating toward better environments for these individuals to not only cope but to thrive! By building on strengths and creating a safety net around them, children and adults with FASD can lead happy and successful lives surrounded by people that love and care for them. They are valuable, beautiful people who deserve the best we can offer them. As one person put it, FASD is not one of the “designer labels” like autism that people have accepted and provided support for. With such a direct, negative source it is not a fun disability to talk about, much less explain to children or adults. It does, however, have just as severe ramifications and being quiet about it never helps. FASD individuals deserve the dignity and respect we give any other person with a disability and they desperately need those around them to be understanding and supportive even when it gets ugly. They are not, after all, at fault for their disability.
My prayer as a mother of children struggling with Fetal Alcohol Spectrum Disorder is that they will not only survive but that I will create an environment where they can thrive!
Every single day I want to make the choice to see the beauty of who they are despite their difficulties. I am humbled to serve a God who can work with even the most broken of vessels and turn it into something intricate, unique and glorious! Nothing can surprise Him, or travel beyond His ability to transform and remold. After all, when it all fell apart He was already there.
“For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there were none of them. How precious to me are your thoughts, O God! How vast is the sum of them! If I would count them they are more than the sand. I awake, and I am still with you.”
Psalm 139:13-18
I pray that God will give me the grace and courage to advocate for, offer grace toward and protect these beautiful souls he’s created in His image.
There is so much more good than bad…if only I choose to see.
“I’ll love you forever, I’ll like you for always.”
AF
I remember the first time I cared for an infant.
Adoption, Mommyhood & the Rest 