TheSycamoreProject Kentucky’s Prevention Enhancement Site For Fetal Alcohol Spectrum Disorders (FASD PES) Donna Wiesenhahn, M.Ed, CPP: Director, Bluegrass Prevention Center & FASD PES Laura Nagle, BA, CPP: Coordinator, FASD PES

What Are We Talking About? Fetal Alcohol Syndrome (FAS) Fetal Alcohol Effects (FAE) Alcohol Related Birth Defects (ARBD) Alcohol Related Neurodevelopmental Disorder (ARND) All of the Above: Fetal Alcohol Spectrum Disorder (FASD)

On any given day in the United States, 10,657 babies are born 1 of these babies is HIV positive 4 of these babies are born with Spina Bifida 10 of these babies are born with Down Syndrome 120 of these babies are born with Fetal Alcohol Spectrum Disorder

Why Focus on Alcohol? Institute of Medicine: Of all the substances of abuse, including heroin, cocaine, and marijuana, alcohol produces by far the most serious neurobehavioral effects in the fetus, resulting in life-long permanent disorders of memory function, impulse control and judgment. National Institute of Alcohol Abuse and Alcoholism: Fetal Alcohol Syndrome (FAS) is the leading known cause of mental retardation in western civilization. Center for Disease Control: Although many individuals with FAS have mental retardation, most individuals with FAS have an IQ in the normal range.

National Institute on Alcohol Abuse and Alcoholism: Persons with FAS have serious problems with attention deficits, impulse control, judgment, and memory. Although many of the physical characteristics associated with FAS become less prominent after puberty,behavioral and emotional problems become more pronounced. Fetal Alcohol Spectrum Disorder is a lifespan issue. Children with FASD grow into adults with FASD.

Kentucky: Prevalence of FASD (Figures based on national prevalence data) Total Population: 3,960,020 Number of live births: 54,492 # of FASD born per year: 543# of total FASD: 39,603 # FASD under 18 years old: 11,880 # FASD 19 and older: 27,720 # FASD & Mental Retardation: 5,702 # FASD & Congenital Heart Defects: 18,873 # FASD & Epilepsy: 2,375# FASD &ADHD: 15,840

# FASD & Speech / Language Disorders: 32,867 #FASD & Hearing Loss / Deafness: 11,087 # children with FASD in Foster Care system: 9,503 # FASD & Mental Illness: 27,720 Annual costs for Special Education and Juvenile Justice for FASD (children age 5 – 18): $19,958,400 Total annual costs for FASD: $104,346,426 Cost per day for FASD: $231,200 Five year costs for FASD: $421,940,130

Practically speaking, what does “brain dysfunction” mean? Characteristic behaviors of an individual with FASD include: Difficulty understanding abstract concepts in more than a superficial way. Difficulty understanding cause and effect. Inability to generalize information from one setting to another; Very rigid thinking. Inconsistent memory & inconsistent performance. Poor judgment.

When the primary brain injury is never acknowledged and addressed, the child grows up believing he is “stupid” and “worthless.” Secondary disabilities develop as a result of the failure to properly deal with the primary disability.

94% of individuals with FASD experienced mental health problems (depression, mental illness, suicide attempts) 60% experienced trouble with the law (charged or convicted of a crime) 60% experienced confinement in a rehab facility, psychiatric hospital or prison 45% demonstrated inappropriate sexual behavior 43% were expelled or drop out of school 30% experienced severe problems with alcohol or other drugs

If a woman is pregnant and she can’t stop drinking, she needs and deserves help. Other things to keep in mind…… FASD wasn’t identified until Medical professionals STILL recommend alcohol to “help pregnant mama relax” Treatment options for women are extremely limited.

Remember…. Alcohol affects whatever is developing at the time that alcohol is consumed.

7 weeks

13 weeks

Frontal Lobe: Responsible for impulse control, judgment, regulation of emotion, planning, self-regulation, motivation Corpus Callosum: Passes information from the left brain (rules, logic) to the right brain (impulse, feeling) “What do you mean I can think about my feelings? I can’t think when I’m feeling.” Liz, 14, FASD Brain Anatomy = Day-to-Day Functioning Hippocampus: Responsible for forming, storing and sorting memories; “packaging” information to be stored in an organized way

In order to effectively address behaviors, we must look at behaviors as an indicator of brain function – rather than as willful misconduct. Non-competence, rather than non-compliance.

Punishing a person with FASD for behavior resulting from brain dysfunction is like punishing a person who is blind for bumping into the furniture.

Individuals with FASD have challenges with… …and yet the environment demands……. slow cognitive pacerapid responses dysmaturity, acts younger than age grouped by age memory problems, often needs re-teaching remember after just one lesson learn by doingabstract learning difficulty transitioningmultiple transitions need more timeone timeline for everyone

How much alcohol does it take to cause damage? What kind of damage is caused by different amounts of alcohol? “Depending on the dose, timing and conditions of exposure, as well as on the individual characteristics of the mother and fetus, prenatal alcohol exposure can cause a range of disabling conditions.” --Dr. Ann Streissguth

Wayne State University: (As published in 2001 Journal: Pediatrics) The researchers found that children who had been exposed to ANY AMOUNT of prenatal alcohol had a much higher incidence (3.2 times higher) of aggressive and delinquent behavior. The effect was observed at average levels of exposure as low as one drink per week.

Belfast, Ireland: (1999 Study) The researchers found that infants who had been exposed to one to four drinks per week showed significant differences in “startle response” and “habituation”, as compared to the comparison group. This indicates damage to the brain stem, which will affect learning and behavior later in life.

“Our lives would have been So much less complicated If all those born with A.R.B.D. (Alcohol Related Birth Defects) Were also born with F.B.H. (Fluorescent Blue Hair).” **Leon’s Mom

Red Flags…… Confirmed prenatal exposure to alcohol Biological sibling with diagnosed FAS Presence of facial features

Orange Flags… Maternal alcoholism Adoptive / foster care status Multiple co-occurring disorders that don’t quite “fit”

Pink Considerations…. “Talks better than he thinks” Frequent rages / meltdowns Inappropriate social interactions Delayed motor skills Difficulty with changes in routine Sensory Integration issues Easily overstimulated / difficult to soothe Poor memory Inconsistent skill levels from day to day

Kentucky Resources, So Far! FASD Prevention Enhancement Site: Funded by Division of Substance Abuse; provides training and technical assistance to programs and agencies. FASD Statewide Training Network: Made up of local professionals who have attended 3-day Training of Trainers; So far, 315 trainers have trained of their colleagues! Kentucky’s FASD Workgroup: Made up of representatives from Mental Health, Public Health, DCBS, Education, Substance Abuse. Goal: to increase the ability of programs to respond effectively to FASD issues

Kentucky Resources, So Far! FASD Diagnostic Clinic: Weisskopf Child Evaluation Center, University of Louisville Dr. Yasmin Senturias

TheSycamoreProject Donna Wiesenhahn, M.Ed, CPP: Director, Bluegrass Prevention Center & FASD PES ( ) Laura Nagle, BA, CPP: Coordinator, FASD PES ( ) –