Transcript Document

The
Sycamore
Project
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 1973.
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
Brain Anatomy = Day-to-Day Functioning
Frontal Lobe: Responsible for impulse control, judgment,
regulation of emotion, planning, self-regulation, motivation
Hippocampus: Responsible for forming, storing and sorting
memories; “packaging” information to be stored in an
organized way
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
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 pace
rapid responses
dysmaturity, acts younger
than age
grouped by age
memory problems,
often needs re-teaching
remember after just
one lesson
learn by doing
abstract learning
difficulty transitioning
multiple transitions
need more time
one 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”
Sensory Integration issues
Frequent rages / meltdowns
Poor memory
Inappropriate social interactions
Delayed motor skills
Easily overstimulated /
difficult to soothe
Difficulty with changes in routine
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 2000+ 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
502-852-7558
The
Sycamore
Project
Donna Wiesenhahn, M.Ed, CPP: Director, Bluegrass
Prevention Center & FASD PES (859-225-3296)
Laura Nagle, BA, CPP: Coordinator, FASD PES
(859-624-3622) – [email protected]