thesycamoreproject kentucky’s prevention enhancement site for fetal alcohol spectrum disorders...

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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 Fetal Alcohol Spectrum Disorder (FASD)(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):

$19,958,400Total 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.

Beginning @ the Beginning

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 Punishing a person with FASD for with FASD for

behavior resulting behavior resulting from brain from brain

dysfunction is like dysfunction is like punishing a person punishing a person

who is blind for who is blind for bumping into the bumping into the

furniture.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 alcoholBiological sibling with diagnosed FASPresence 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 / meltdownsInappropriate social interactionsDelayed 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 Kentucky Resources, So Far!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 Kentucky Resources, So Far!Far!

FASD Diagnostic Clinic:

Weisskopf Child Evaluation Center, University of

Louisville

Dr. Yasmin Senturias

502-852-7558

TheTheSycamoreSycamore

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Donna Wiesenhahn, M.Ed, CPP: Director, Bluegrass Prevention Center

& FASD PES (859-225-3296)

Laura Nagle, BA, CPP: Coordinator, FASD PES (859-624-3622) –

Lmnagle@bluegrass.org