“Living With FASD” offers 22 free webinars throughout september to parents, families and professionals to help support those with FASD

Living With FASD 2014 Summit: Building a Bridge to Adulthood
25+ hours of online training for families & professionals living and working with those with Fetal Alcohol Spectrum Disorder (FASD)
September 9th – 20th, 2014

Though this year’s theme is “Building a Bridge to Adulthood” the information given is as important to those caring for individuals with FASD who are younger than their teen years. It is important to be familiarized with systems and specific services and have them put in place as early as possible.

Experts will share practical approaches to prevention, and support strategies—from their professional and personal experience. The webinars will provide up to date training in the following 7 topics:

  1. Independence vs. Interdependence: Those with FASD will require external support for their lifetime (systems and other people acting as an external brain), thus interdependence is a more realistic goal rather than full independence;
  2. Substance Use and Treatment: 46% will face issues of substance use in their lifetime;
  3. Mental Health: 90% will experience some kind of mental health issue (suicide, depression, ADHD, etc.);
  4. Legal Issues: 60+% will have trouble with the law or be confined, mainly due to a lack of understanding between cause and effect;
  5. Vocation and Employment: Understanding the difference between personal and work relationships, being “on time”, and handling money;
  6. Sex: Engaging in inappropriate sexual behaviour (either as victim or perpetrator) and not understanding all responsibilities involved when having children of their own;
  7. New Research: Prominent FASD researcher Dr. Ed Riley speculates that brain maturation in those with FASD can occur 10 years later than their peers (find out why this is good news!).

A huge advantage of these series of webinars is that they are easily accessible from the comfort of your home, workplace or even on the road.

– See more and register at: http://livingwithfasd.com/#sthash.3Cjf60hp.dpuf

Prevention Approaches in Australia

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

Written by Nathalie P

Prevention Approaches in Australia

At first glance, it seems outrageous that children with FASD can’t have a normal life because their mother’s irresponsible decision to use alcohol during pregnancy. In some communities, the high prevalence rates of alcoholism and social pressures make alcohol abuse common during pregnancy. The “Lililwan Project” has been established to study the prevalence of FASD in Australia where rates are high among indigenous (aboriginal) populations. The project aims to help children with FASD by involving families, doctors, and teachers to address their unique learning and developmental issues. It also raises awareness about the dangers of drinking alcohol during pregnancy. These efforts have led to some aboriginal groups in Western Australia taking action to prevent FASD by successfully limiting the sales of hard liquor in their communities.

My question is – if small communities in Australia are able to get the message out that alcohol use at any point in pregnancy is dangerous, what is stopping us from spreading the word throughout the U.S.?

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