Raising Awareness About FASD

Dr. Susan D. Rich has given Grand Rounds at the University of Minnesota Department of Psychiatry on November 12, 2014 and at Georgetown University Medical Center on Tuesday, January 6th about the topic of Neurodevelopmental Disorder associated with Prenatal Alcohol Exposure (ND-PAE), the diagnostic term in DSM-5 for Fetal Alcohol Spectrum Disorder.

In an article in Psychiatric News in 2005, Dr. Rich said:  “I was furious when I first heard the term ‘funny-looking kid,’ or FLK, almost 12 years ago. A rural pediatrician was describing how doctors overlook the possibility of fetal alcohol syndrome (FAS), the physical and neuropsychiatric effects of prenatal alcohol exposure. He said, ‘They look at the parents and say – `They’re pretty funny looking, too.. .so, I guess it’s genetic.’ My passion for prevention of alcohol-related birth defects has been fueled by such attitudes.”

Dr. Rich has been speaking widely about her clinical work with patients who have ND-PAE and the clinical link between autism and FASD. In November, she also spoke at the Minnesota Organization on Fetal Alcohol Syndrome’s annual conference: “FASD and Human Rights.”  During October, she chaired an all day Etiology, Diagnosis, Treatment, and Prevention in an Era of DSM-5 at the American Academy of Child and Adolescent Psychiatry annual conference in San Diego, California.

DSM-5 includes the diagnosis of “Neurodevelopmental Disorder Associated with Prenatal Alcohol Exposure” (ND-PAE) under “Specified Other Neurodevelopmental Disorders” (315.8). The Centers for Disease Control and Prevention estimates that as many as 1 in 20 (or 2-5%) of school aged children in middle class communities have some degree of this preventable disorder. Up to 85% of individuals with ND-PAE have a lifetime prevalence of moderate to severe mental illness.

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FASD Awareness Day 2014 “Bring on the Beer and Pass Out the Condoms”

Our Better Safe than Sorry Project effort with Planned Parenthood of Metropolitan Washington in recognition of FASD Awareness Day was a success.  Six volunteers distributed condoms at a booth outside The Barking Dog bar in Bethesda, Maryland on Saturday evening (before the party crowd).  Our aim was to test the idea as a pilot project, to gather reactions from pedestrians and patrons, and to learn more for future campaign events.

Booth

Our display booth with free condoms was visited by a number of pedestrians and bar patrons.

Table with condoms

Informational condom cards made a nice display with the U.S. Surgeon General’s warning cards by the bathroom door.

 Bathroom stalls

We posted posters behind the bathroom stalls where customers could read over the information in privacy.

Top 10 BSTS Lessons Learned about Condom Distribution:

  1.  Female bartenders felt passing a condom with the first drink of the evening would seem like a proposition. Duh! Why didn’t we think of that???

  1.  50 and 60-somethings agreed to share the informational condom pocket cards with their 20 and 30-somethings (who were partying elsewhere) – men seemed more open than women.

  1.  A scientist from the Environmental Protection Agency now knows that prenatal alcohol exposure affects 2-6% of American children – a bigger problem than environmental chemicals!

  1.  Most people thought that the CDC rate of 1 in 8 (13%) underestimated true numbers of college women binge drinking and were shocked that 50% of U.S. pregnancies are unplanned.

  2.  When passing a condom to a pedestrian, do so discretely (i.e., whisper, don’t shout – “Use a condom if you drink alcohol!”).

Pass it on –  Contracept if you drink alcohol to prevent FASD!!!!

Free Condoms at the Barking Dog Bar and Grill for FASD Awareness Day

In recognition of FASD Awareness Day, on September 6th, the Better Safe than Sorry Project Team will be at the Barking Dog pub in Bethesda, MD distributing 999 condoms and informational materials about FASD.

The condoms were donated by the Planned Parenthood of Metropolitan Washington.  For each first drink of the evening purchased, patrons of the bar will receive a condom with a bookmark cover to promote contraception for alcohol consumers.  BSTS project volunteers will provide information and a brief discussion about FASD for those who express interest in learning more.

 front of condom cover  inside of condom cover Back of condom cover

Our project concept was developed by our interns after the idea was suggested during one of our summer talk show segments.  From a primary prevention perspective, It’s a little further “upstream” approach than the pregnancy test kits in bars – another extraordinarily innovative project implemented in Minnesota and Alaska.

STOP our social drug of choice from affecting 2-6% of school aged children with preventable brain damage.  Just like HIV/AIDS & STD prevention, help spread the word to “contracept if you use alcohol!” 

Special thanks to BSTS volunteers Melissa Blair and Nick Muzic, BSTS interns Sydnie Butin, Juliana Pietri, Carlye Hillman, Kaitlyn Gularson, and Nathalie Pollack, and our fabulous BSTS Blog Master, Daniela Mielke for creating and implementing the innovative FASD Awareness Day prevention project. We are also thankful to the Barking Dog bar and grill for letting us promote our project there and to Robert Ridley of Planned Parenthood of Metropolitan Washington for donating the condoms.

The Need for Public Education about FASD/ND-PAE

BSTS Blog Series: “Protecting unborn babies from alcohol-related harm”

Written by Nathalie P

The Need for Public Education about FASD/ND-PAE

Through health classes in school, we have learned that consuming alcohol while pregnant is a problem. However, I believe kids and teenagers don’t learn enough about the damage drinking during pregnancy can cause. We are taught that alcohol use increases rates of violence, crime, and sometimes death or suicide. What schools should also teach us is that consuming it even before you know you are pregnant can lead to Fetal Alcohol Syndrome or other Fetal Alcohol Spectrum Disorders (FASD). These problems can range from physical birth defects to “functional” birth defects, which may include intellectual disability, learning issues, mood outbursts, and other psychiatric or behavior problems. These are serious and irreversible effects on the life of a child.

The National Organization on Fetal Alcohol Syndrome and the University of North Carolina School of Medicine in collaboration with the Centers for Disease Control and Prevention and the National Institutes on Alcohol Abuse and Alcoholism have programs available for high school, middle school, and elementary school teachers to educate children and adolescents about FASD. These programs are available online through the following websites:

NOFAS FASD Kindergarten through 12th Grade Education and Prevention Curriculum: http://www.nofas.org/k-12-curriculum/

UNC-CH Better Safe than Sorry Curriculum: http://pubs.niaaa.nih.gov/publications/Science/curriculum.html

“When Rain Hurts” by Mary Greene

In this episode of the BSTS talk show, change agents and Dr. Rich recently sat down with Mary Greene, an adoptive mother of two children from Russia, to discuss her memoir, which is much like a contemporary version of Michael Dorris’s, “The Broken Cord.”   

 
“Mama, rain hurts Peter.”
 
This was among the first intelligible sentences Mary Greene had ever heard her six-year-old son say.   The pain caused by the gentle touch of rain is a poignant example of sensitivity to commonplace stimuli that FASD are troubled by on a daily basis. 
 

In her book “When rain hurts” Mary describes her journey of adopting Peter and her daughter, Sophie, as toddlers, and the struggles and joy she and her husband have experienced since then.  From discussions about her son’s disruptive behavior to learning about and dealing with his FASD-related special needs, she opens up her life in a very honest and touching way.

“You can still love someone but hate what it’s doing to our family and what it is doing to him. And the impact that it is having on all of us.”
From the beginning of their family life together, Mary and her husband, Pat, consulted Dr. Aronson, an international adoption specialist who was uncertain about the degree of Peter’s FASD, but fairly certain that he had it.  Over time, Peter’s behavior seemed very robotic. He repeated things over and over again and seemed autistic. His sensory issues caused him to refuse most foods except those with soft texture.   One of the strongest supports she found was Dr. Ronald Federici, a well-known developmental neuropsychologist from Clifton, VA specializing in post-institutionalized children with histories of profound neglect and deprivation.  He diagnosed Peter with Autism and Fetal Alcohol Syndrome as well as intellectual disability.
 
 
Reading the book, most of all, I enjoyed her journey entries as snapshots in time. Mary says that her journal entries reflect an evolution of her parenting skills over time. For children with FASD normal/natural parenting strategies don’t work.  As an example, consequences are difficult to use to change behavior because many kids with FASD have a hard time learning from experience.   Like Peter, they can be impulsive, easily led and gullible, have poor judgement, and difficulty deciding between right and wrong.  For parents and caregivers, this means they must adjust their expectations to the child’s capabilities.  Because they have problems with “cause and effect” reasoning, there is a high rate of incarceration among individuals with FASD.  The difference in Peter’s case is that his parents understand his underlying special needs and have proper supports put in place to prevent him from being taken advantage of or ending up in jail.
 
Though parenting a child with FASD has been challenging, when given the choice to change anything about her situation, Mary emphatically states – “I would always choose my children!”  
 
From her first hand experience raising a child with this preventable developmental disability, Mary believes we must change the way we speak with women during childbearing years.
“The message has to be changed, that  drinking when you have the opportunity to get pregnant is dangerous and comes with risks. Doctors and other health care professionals need to speak honestly with women about their drinking habits.”
 
Thank you Mary Greene for taking the time to talk to us about “When Rain Hurts.”  Your book has inspired us and will hopefully motivate others to change their lifestyle behaviors before, not just during, pregnancy.
Daniela Mielke

FASD and the brain-based approach: 1-day workshop, Falls Church VA, June 25

Hi everybody,

We would like to share this great opportunity with you to LEARN MORE about

caring for and working with individuals with fetal alcohol spectrum disorder.

SPONSORED BY FAFASD

Fetal alcohol workshop for caregivers+professionals, June 25 Falls Church VA

FASD/Other Neurobehavioral Conditions: A Brain-Based Approach

Workshop on caring for and working with individuals with fetal alcohol spectrum disorder

FASD is a brain-based physical disability with behavioral symptoms. The brain-based approach to living with, caring for, and working with individuals and families impacted by FASD acknowledges the source of behaviors: the brain, and provides a set of research-based best practices for helping people with fetal alcohol exposure, originally created by Diane Malbin of FASCETS.

This workshop is open to all parents and professionals working with or caring for individuals with diagnosed or suspected fetal alcohol exposure. 

June 25, 2014: Falls Church, VA. 9 a.m. to 4 p.m. Sponsored by FAFASD.
At Celebration Center for Spiritual Living, 2840 Graham Road, Falls Church VA 22042. Workshop for parents and professionals. Certificate of attendance issued at completion. 

Please see the website for full details. Registration is required.

 

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4 Families Seek to Confront, Understand FASD – a Touching Documentary Revealing the Impact of FASD on a Child

The last post was introducing us to 4 women and their life stories. This article is about their children:

The impact of FASD on the life’s of Serenity age 6, Jacob age 9, Elaine age 10 and Elijah age 8.

“A child with an FASD can suffer damage to parts of the brain that determine intelligence, memory, language ability, motor skills and senses like touch and hearing.” They can be hypersensitive to temperature, noise and/or touch. In most cases their disability is not visible, so in daily life people don’t notice it right away meaning they might not be able to provide the needed help or care e.g. at school.

Children with FAS or FASD sometimes display “dysmaturity”, meaning their emotional ages are much younger than their actual ages.

Heidi Case “It’s not always alcoholics who have these children with FASD,” she said. “It’s people like me who went on a cruise and had a little fun and now, not only are we paying for it as a family, but I have a son who is paying for it for the rest of his life. The hardest thing is just knowing that it won’t ever go away,” Heidi said. “It’s not a mental illness. It’s not something that can be fixed. It’s brain damage.”

The struggles they are going to face all through life could have been prevented. That’s a burden their mother’s have to carry on for their whole life.

It is a very interesting and touching article and a great overview of FASD.

To read the whole article visit http://www.adn.com/2014/02/24/3344493/a-silent-epidemic.html