5 Reasons FASD is Invisible (and 3 ways to Change That)

Quick! What is the leading cause of intellectual disabilities (mental retardation) in the United States?

A. Down Syndrome
B. Autism Spectrum Disorder
C. Microcephaly caused by the Zika Virus
D. Fetal Alcohol Spectrum Disorders

The answer is D, fetal alcohol spectrum disorders (FASD). As I pointed out in why awareness needs to be raised for FASD, more babies are affected by FASD than Down syndrome, cerebral palsy, SIDS, cystic fibrosis, and spina bifida COMBINED.

But if FASD affects so many people, why is it still relatively unheard of? Here are 5 reasons FASD is invisible.

1. Brain Damage is Invisible

Many of the effects of FASD are internal, such as damage to the brain and central nervous system. Since these are on the inside, and the differences are not visibly obvious, it can be hard to tell that there is any disability. Even in a diagnosis of full fetal alcohol syndrome (FAS), which requires 3 specific facial features, these features are often subtle and difficult to pick out before a child is 2 years old or after adolescence. Children with FASD often look similar to their peers, but that does not mean they do not have challenges.

2. Bad Behavior is Not the Real Problem

The effects of FASD may not appear physically but do often come out looking like bad behavior. Impaired judgment, difficulty understanding cause and effect, and memory problems are common effects of FASD that can lead to what looks like bad behavior. However, the behavior is often just an effect of the FASD. A child with FASD may lie because they actually cannot remember the truth. Learning disabilities and trouble focusing make school work difficult and may cause a student to be labeled “difficult”. The real problem is hidden, and the child ends up punished.

3. Still Waiting for Research

While it is known that exposure to alcohol prenatally is the cause of FASD, there are still many more unknowns. Multiple reasons contribute to the lack of research. The stigma of drinking while pregnant can cause pregnant women to not share about their alcohol use, which makes it difficult to study how drinking patterns affect prenatal development. Studies also cannot just assign some women a certain amount of alcohol to drink and none to others and see how the children are affected, as that would be highly unethical! The Centers for Disease Control and Prevention and other organizations are still in the process of putting together diagnostic criteria for FASDs other than FAS, which makes FASD difficult to study when there is no standard diagnosis.

4. No TV Show

Understanding of Down syndrome has increased with the show Born This Way, featuring young adults with Down syndrome. Mental illnesses and mental health are becoming more talked about as celebrities open up about their own struggles. FASD, however, is not often seen or discussed except on websites or Facebook pages specifically dedicated to it. However, the National Organization on Fetal Alcohol Syndrome (NOFAS)  has produced some videos of people with FASD speaking about their experiences *LINK and with social media, awareness can be raised and information shared now more than ever!

5. Stigma

The stigma of FASD, both for mothers and individuals with it, keeps it hidden. FASD is caused only one way: prenatal exposure to alcohol. The stigma, shame, and guilt of a mother can make it hard to share a diagnosis, or even seek one in the first place. Mothers are afraid to speak up. When they do, they often face judgment from doctors, teachers, and others. Stigma only keeps FASD invisible. Women need support, not stigma.

 

Those are just a few reasons that FASD seems to be invisible in our society. Organizations such as NOFAS work hard to shed light on FASD, and you can join them.

Here are some ways to make FASD visible in your life:

Keep Learning about FASD

Keep Listening to People with FASD

Keep Talking and Sharing about FASD

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International FASD Awareness Day

Today, September 9th, is International FASD Awareness Day!

What is FASD? See this post about fetal alcohol spectrum disorders (FASD).

Consider taking a few moments today to talk to someone with FASD and find out how it affects his or her life.

You can also hear people explain what FASD means to them in the following resources:

Jasmine; a young woman living with FASD (Video)

Rebecca; a mom with FASD (Interview Article)

Four young adults with FASD (Video)

3 People Who Need You to Be Aware

Is a whole month dedicated to fetal alcohol spectrum disorders (FASD) awareness really necessary? There are so many “awareness” months already for things like breast cancer, autism, and Down syndrome. Many people know of autism or can think of someone in their lives affected by cancer, but not FASD.

However, FASD is the leading known cause of intellectual disabilities in the United States. An estimated 40,000 babies a year are born with effects of prenatal alcohol exposure. FASD affects more people than Down Syndrome, Muscular Dystrophy, and Spina Bifida combined.

Chances are, there are people in our lives right now who are affected by FASD. These people need us to be informed. The more we are aware, the better friends, neighbors, and community members we can be.

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Three People Who Need You to Be Aware:

Individuals with FASD

When society is more aware of FASD, individuals with FASD are better able to thrive. Young children need doctors who are aware of FASD. The earlier children can be diagnosed and get intervention, the better outcomes they have. School-aged children need teachers who are understanding of the behavior and learning problems caused by the brain damage of FASD. Adolescents with FASD need friends who care and are accepting of how FASD affects their friend. Adults need communities, including work places, that are aware of the adaptive skills people with FASD use to function well.

Family Members

Families benefit when friends and communities are aware. It is encouraging for families when their member with FASD is accepted by others. Friends who are aware of FASD also encourage families in other ways. Sticking to a consistent schedule is easier for families when friends accept that the reason is to provide predictable structure for a family member with FASD. A babysitter who is familiar with FASD can enable parents and guardians to attend seminars on FASD or support groups while providing peace of mind that the child will be cared for appropriately. Siblings of children with FASD need people to be aware in order to relieve the pressure of having to defend and explain their sibling to everyone.

Pregnant Women

Pregnant women also benefit when society is aware of FASD. Pregnant women need doctors who are up-to-date with the current information about FASD. They need doctors who are willing to discuss alcohol use during pregnancy. Women dependent on alcohol need communities who acknowledge the difficulties of alcoholism and provide support. Mothers of children with FASD need friends and community members who know that stigma about the cause of FASD only hurts people and does not help mothers, families, or individuals with FASD.

Which of these three people are in your life?

FASD touches our lives more than we are aware. Being aware makes a difference for the people in our lives. Simple changes to our understanding and attitudes can make life easier for those dealing with FASD.

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Still think a whole month is too much for FASD?

At least take some time tomorrow, International FASD Awareness Day, to talk to someone with FASD and find out how it affects his or her life.

You can also hear people explain what FASD means to them in the following resources:

Jasmine; a young woman living with FASD (Video)

Rebecca; a mom with FASD (Interview Article)

Four young adults with FASD (Video)

FASD: What Everyone Should Know

Okay, raise your hand if you know what FASD stands for. (If your hand was down, this post is for you!)

FASD_Month_no_national

September is FASD awareness month and to kick it off this post will give you the basics that everyone should know about FASD.

FASD stands for fetal alcohol spectrum disorders. FASD is an umbrella term for multiple disorders caused by exposure to alcohol before birth. The effects of being exposed to alcohol prenatally are wide-ranging and permanent. While there is no cure, FASD is preventable.

Continue reading “FASD: What Everyone Should Know”

Book Memories

Memories have a way of finding me suddenly, off-guard, and all at once.

Like a free children’s book that arrives in the mail one day, reminding me of little girls who used to live with my family.

The book was one of their favorites. They would ask me to read it to them over and over and over and over and over and over…

I got pretty good at using different voices while reading in order to make it interesting (for myself). They never got tired of the book. Even when I picked out other books to read, one of the girls would go find that book to add to the pile.

When I read the book, the older girl would “read” it along with me. Her little voice would mumble along until we got to the repeated “No!” parts, which she would pronounce loud and clear. She knew if I skipped over any parts and would remind me to read everything on the page.

I made sure she had her own copy of the book when she left our foster home. It put a smile on my face knowing that she would have her favorite book at her new home. Hopefully, it put a smile on her face too.

And hopefully her mother can forgive me for including a book that she has had to read over and over and over again!

Book Memories

Not Grieving in Words

A coupon for 20% off a certain brand of lotion has been pinned to the wall above my desk. I just pulled it down to check when it expires.

The coupon expired January 31, 2016.

My desk has been in a similar state of neglect. Under textbooks, scattered post-it notes, three mechanical pencils I have been looking for, and receipts (some from Wal-Mart, others from the library), I found a picture of two little girls I dearly love. Their faces poke out from a blanket as they smile, together. One of the little girls is now my sister. The other…I miss.

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I do not mean to throw a pity party. After all, she is doing well. Her mother is working hard and loves her. My family even gets pictures from them occasionally, so I can see that the little girl still has the same self-assured smile.

Back when she was leaving our foster home, I wanted to hold on to the memories I had of her. I wanted to spend time writing down stories so her little quirks and personality would remain vivid in my mind. It is something I wish I had done more with previous foster children. When she left, I tried to make time to write down special memories.

Here I am a year later. I wrote down a total of one story, about the first day she came. I have not written anymore. Sometimes I did not write because the memories were painful to relive. Other times I could not write because other children had come to our home. Then again, I was also busy with a new job and college and all those other things in life. I was too busy to grieve or write.

Now as I seek out memories of her, the stories are faded. The details are fuzzy, and many whole scenes are missing. It seems that during this un-grieving year, I have lost my memories of her. My mind silently let the stories slip away. My heart grew numb to the thought that she will never be a part of my life again. My life has rearranged itself to go on without her.

Then I see the picture on my desk. The image of her peaceful smile challenges that line of thinking. In an instant, the memory is brought back to life. The mental dust is shaken off, and I remember the scene:

The summer sun drifting in and out of the clouds, its afternoon beams warming the room…
The girls, with dozens of stuffed animals and baby dolls heaped in piles all around them…
Their giggles, one clear and the other muffled by a pacifier…
Both of them lying down, their feet in opposite directions, but their heads right next to each other…

The memory is all there. It has not been lost, even if I had never written it down. The picture reminds me that it is okay. Remembering can be done in many ways.

Maybe a picture really is worth a thousand words. Maybe I did grieve this year, in a different way.

Now I think I am ready to get back to writing.

College of Irony

Whoo-Hoo!

I just turned in my last assignment for college this semester! It’s also, like, two weeks early so that is awesome. Now I am getting ready to launch into an internship working in a early childhood education facility.

That is kinda ironic.

I mean, really- I have to pay the college in order that I can work a bunch of hours for free to prove that I know how to work with kids, all for a degree that I am only getting to prove that I already know how to work with children.

*Sigh.* Adulthood makes no sense sometimes.