Transcript No Slide Title

FASlink
Fetal Alcohol Disorders Society
2448 Hamilton Road, Bright's Grove, Ontario N0N 1C0
Phone: (519) 869-8026
E-Mail: [email protected]
Website: www.faslink.org
Don’t Ask My Child to Fly
© Bruce Ritchie 1997
Don't ask my child to fly,
for he has not wings..
Don't ask my child to remain
calm amid the din,
for her ability to screen out the
noises has been taken away.
Don't ask my child to be
careful with "strangers",
for he is affectionate with everyone and
prey for the unscrupulous.
.
Don't ask my child to "settle
down",
for the clock which works for you and I,
does not exist for her.
Don't ask my child to not
play with the toys of others,
for he has no concept
of property.
Don’t ask my child to
remember you tomorrow,
although you met today.
.
Don't ask my child to heal
your wounds,
for her hands cannot hold a
scalpel or sutures.
Don't ask my child to meet the
challenges set by society,
for you have denied her the tools.
.
Don't ask my child to forgive
you for standing idly by,
.
while he was in trouble in his
mother's womb,
for he will,
but
He may not.
An individual’s place, and
success, in society is almost
entirely determined by
neurological functioning.
• A neurologically injured child is unable to
meet the expectations of parents, family,
peers, school and career and can endure
a lifetime of failures.
• The largest cause of neurological damage
in children is prenatal exposure to alcohol.
• These children grow up to become adults.
• Often the neurological damage goes
undiagnosed, but not unpunished.
What is FASD?
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Fetal Alcohol Syndrome (FAS),
Fetal Alcohol Effects (FAE),
Partial Fetal Alcohol Syndrome (pFAS),
Alcohol Related Neurodevelopmental
Disorders (ARND),
• Static Encephalopathy (alcohol exposed)
(SE) and
• Alcohol Related Birth Defects (ARBD) are
all names for a spectrum of disorders
caused when a pregnant woman consumes
alcohol.
"Of all the substances of abuse, including
heroin, cocaine, and marijuana, alcohol
produces by far the most serious
neurobehavioral effects in the fetus.”
--Institute of Medicine 1996 Report to Congress
Genetics
Uddin RK, Treadwell JA, Singh SM
Department of Biology and Division of Medical
Genetics, The University of Western Ontario
Ethanol alone was
found to interact
with over 1000
genes and cell
events.
Ethanol responsive
genes directly
regulate and are
themselves regulated
by the activity of
other proteins and
cell processes.
There is no safe level of
alcohol consumption during
pregnancy.
.
FASD is 100% Preventable
www.faslink.org
• Legally intoxicated is defined as a Blood
Alcohol Level (BAL) of .08%.
• Permanent brain cell damage begins at a
BAL of .07%.
• A 100 lb (45 kg) female consuming 5
standard drinks will reach a BAL of .25% three times the legal limit. BAL reduces
.01% per hour.
• A drink equals a 12 oz. regular beer, 1 oz.
shot of 100 proof liquor, 1.5 oz. shot of 80
proof liquor, or 4 oz. glass of regular table
wine.
Statistics Canada, Canadian
Community Health Survey, 2000/01
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6.8% of girls ages 12 to 14
19.8% of girls age 12 to 19
26.0% ages 20 to 24
19.9% ages 20 to 34 consumed 5 or more drinks
on each occasion 12 or more times per year
An additional:
• 13.8% of girls ages 12 to 14
• 32.2% ages 15 to 34 consumed 5 or more
drinks on each occasion 1 to 11 times per
year.
Prenatal Alcohol Exposure
• 37% of babies have been exposed to
multiple binges (5+ drinks/session), often
before the girl knew she was pregnant.
• Another 42% are exposed to multiple sessions
of 1 to 4 drinks per occasion.
• 15% to 18% continue to drink throughout
the pregnancy, 4% at elevated levels.
• Maternal prenatal alcohol
consumption even at low levels is
adversely related to child behavior.
• The effect was observed at average
exposure levels as low as 1 drink per
week.
Alcohol Startle Response
Ultrasound image of fetus when exposed to alcohol
Just one glass of
wine a week can
make babies
“jump” in the
womb throughout
a nine-month
pregnancy.
Experts believe
this abnormal
hyperactive
behaviour is the
result of alcohol
slowing or
retarding the
formation of the
central nervous
system.
• FASD is so grossly under-reported
that the traditional FAS statistics
are almost meaningless.
• Very few doctors have received any
training in diagnosing FASD
• Many will not diagnose FASD for fear
of stigmatizing the child and/or the
mother.
• FASD is not a threshold condition.
• FASD is a continuum ranging from mild
intellectual and behavioural issues to the
extreme that often leads to profound
disabilities or premature death.
• It is somewhere in the middle of the
continuum that the issues attract the
attention of parents, educators, medical
and social work professionals, and
eventually the justice system.
Incidence
• Most of the issues that attract
sufficient attention are behavioural and
performance issues.
• "The most outstanding characteristics
of FAS are bad judgment and the
inability to make the connection between
an act and its consequences."
(Streissguth, AP)
Incidence
• Approximately 20% of Canadian school
age children are receiving special
education services, most for conditions
of the types known to be caused by
prenatal alcohol exposure.
Alcohol as a teratogen
• Foolish, drunken, or
harebrain women most
often bring forth
children like unto
themselves
Aristotle in Problemata
• Behold, thou shalt
conceive and bear a son:
And now, drink no wine
or strong drink.
Judges 13:7 (1070 B.C.)
Effects of Alcohol as a Teratogen on the Baby
Brain damage resulting from
prenatal alcohol
photo: Clarren, 1986
Alcohol is toxic at all concentrations
• Damage varies due to volume ingested,
timing during pregnancy, peak blood
alcohol levels, genetics, mother’s health
and nutrition, and environmental factors.
FASD is a lifetime disability
• It is not curable. A child does not "grow
out of it".
• However, early diagnosis and intensive,
and appropriate, intervention can make
an enormous difference in the prognosis
for the child.
FAS – Only the tip of the iceberg
• Fetal Alcohol Syndrome
• Partial Fetal Alcohol
Syndrome
• Alcohol Related
Neurodevelopmental
Disabilities
• Alcohol Related Birth
Defects
• Clinically suspect but
appear normal
• Normal, but never reach
their potential
Adapted from Streissguth
Early diagnosis can help prevent
secondary disabilities such as
• mental health problems
• dropping out of school
• trouble with the law and
• substance abuse.
Parents often find that their ability
to cope with the child's behavior
changes dramatically when they
understand that the problems are
most likely based on organic
brain damage, rather than the
child's choice to be inattentive or
uncooperative.
Prenatal alcohol
damage can include:
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Loss of intellectual functioning (IQ)
Mild to severe vision problems
Dangerously high pain tolerance
Severe loss of intellectual potential
Mental Retardation
Dyslexia
Serious maxilo-facial deformities
Dental abnormalities
Cleft palate
•Immune system malfunctioning
•Behavioral problems
•Attention deficit disorders
•ADD/ADHD
•Extreme impulsiveness
•Poor judgement
•Little or no retained memory
•Deafness
•Little or no capacity for moral judgement
• Little or no capacity for interpersonal
empathy
• Sociopathic behaviour
• Epilepsy
• Tremors
• Cerebral palsy
• Renal failure
• Asthma
• Complex seizure disorder
• Developmental speech and language
disorder
• Developmental delay
• Height and weight deficiencies
• Tight hamstrings
• Cognitive perseveration
• Echolalia
• Autistic traits
• Rigidity
• Sleep disorder
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Developmental coordination disorder
Adaptive esotropia
Tourette's traits
Central auditory processing disorder
Night terrors
Precocious puberty
Social problems
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Depression
Reactive outbursts
Heart defects
Heart failure
Suicide
Death
FAS Physical Abnormalities
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98% are under normal height and weight
84% Microcephalic
89% Mental and Motor Retardation
80% Speech impediments
20% Hearing problems
20% Swallowing/Feeding problems
72% Hyperactive
58% Slack muscles
20% Autism/Aggressive/Social Problems
FAS Physical Abnormalities
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95% Facial anomalies
29% Heart defects
10% Kidney defects
46% Genital deformities
25% Eye problems
16% Bent crooked little finger
51% Shortened and bent little finger
13% Underdeveloped fingers
9% Hip deformities
16% Small teeth
FAS Physical Abnormalities
• 30% Pigeon Chest
• 7% Concave chest
• 7% Cleft palate
• 44% Spinal dimple
• 12% Hernia
• 35% Hairgrowth on back of neck
Without diagnosis, FASD can create
a number of secondary disabilities.
The girls get knocked up and
the boys get locked up.
They are followers, easily misled, with little or
no appreciation of consequences. Without
intervention, many drop out of school, ride
the justice system merry-go-round or
become "homeless street people and
squeegee kids".
They are required to compete in society but
have been denied the tools to do so.
The brain's Frontal Lobes
control:
judgement, inhibition,
concentration, selfcontrol, conscience,
personality and
emotional traits as
well as cognition and
memory, motor
speech and
movement skills.
The Left Hemisphere
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deals with language based memory
logical interpretation of language
mathematics
abstraction and reasoning
facts and rules (such as safety and social).
The Right Hemisphere
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deals with holistic functioning
processing of images, sound, touch,
for a "holistic" picture.
Memory here is visual, auditory and
spatial.
So, the Left side is logic, facts,
rules.
The Right side is sensory input
and reactive.
The Corpus Callosum
connects right and left sides to allow
communication between the hemispheres.
The Right side senses input,
checks with the Left side to
see if there are rules to deal
with this pattern of input,
integrates the stored
information and reacts in a
modified way.
• Damage to any of these systems causes
very poor, impulsive and inappropriate
response.
Alcohol seriously damages the
physical structures, "wiring"
and brain chemistry.
FAS (Fetal Alcohol Syndrome)
individuals have a distinctive
physical appearance and lower
IQs, but have lower crime and
addiction rates than individuals
with FAE/ARND as they get
earlier diagnosis and can be
better protected by society and
their parents.
photo: Clarren
While individuals with FAE (Fetal Alcohol
Effects) / ARND (Alcohol Related
Neurodevelopmental Disabilities) may
lack the outward physical appearance of
alcohol damage, the internal damage to
the brain and other organs can be just as
serious as FAS with the outward physical
appearance features.
However, because individuals with
ARND / FAE "look normal" they are
expected to perform normally. These
issues lead to secondary disabilities.
Individuals with ARND / FAE
between the ages of 12 and 51:
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95% will have mental health problems;
68% will have "disrupted school experience";
68% will experience trouble with the law;
55% will be confined in prison, drug or alcohol
treatment centre or mental institution;
 52% will exhibit inappropriate sexual behaviour.
Individuals with ARND / FAE
between 21 and 51:
 more than 50% of males and 70% of
females will have alcohol and drug
problems;
 82% will not be able to live independently;
 70% will have problems with employment
It is useless and cruel to punish
someone for having been born with a
disability.
• You cannot cure brain injury with
punishment.
Costs of FASD:
• Each individual with FAS individual costs the
taxpayer more than $3 million (Canadian Funds)
in his or her lifetime (health problems, special
education, psychotherapy and counseling,
welfare, crime, and the justice system).
• More than 50% of prisoners are affected by
prenatal alcohol exposure.
• It costs approximately $120,000/year to imprison
a Young Offender and $82,000 for an adult
offender.
Add on:
 the lifetime loss of income
 the high costs to the families (foster,
adoptive or biological) who raise and
care for children and adults with FASD
 the lost income of a parent who must
care for the exceptionally high needs of
a child with FASD
Add on:
 the costs to families whose child with FASD is
permanently dependent upon them
 the costs of legal services for defending their
child in the courts
 the cost of stress caused divorce, etc.
 The list goes on and on.
Demonstration
Break a raw egg into a wine glass. Add
one ounce of alcohol. Watch the clear
part develop white streaks as the
alcohol "cooks" it.
That is your baby's brain on alcohol.
Student Checklist
• learns a simple task but forgets quickly
• hurts others by biting, kicking, etc.
• has not developed any friendships
• seems not to hear so a hearing loss is
suspected
• frequently does not attend to social /
environmental stimuli
• does not use toys appropriately
• does not follow simple commands that are
given once
• strong reactions to routine/changes in
environment
• does a lot of lunging and darting about
• not responsive to other people's facial
expressions/feelings
• has special abilities in one area of
development which seems to rule out
mental retardation
• Speech does not follow simple
commands involving prepositions
• severe temper tantrums or frequent
minor tantrums
• does not imitate other children at play
• does not wait for needs to be met, wants
things immediately
• difficulties with toilet training
• often frightened or very anxious
• looks through people
• frequently unaware of surroundings and
may be oblivious to dangerous
situations
• is very destructive
• a developmental delay was identified at
or about 30 months of age
• stares into space for long periods of
time
• as a baby was irritable with weak sucking
reflex
• as a baby had feeding difficulties
• as a baby experienced difficulty
establishing regular sleeping patterns
• not afraid of strangers
• short for age
• small head
• strong need for bodily contact (patting,
touching, etc.)
• problems in fine motor control
• problems in gross motor-control
• trouble with sequencing (counting, etc.)
• difficulty controlling impulses
• Difficulty predicting consequences
• difficulty understanding abstract
concepts
• difficulty seeing sameness in daily living
situations and in making generalizations
Some Solutions:
Medical Education
• Teach physicians and other health
professionals to screen, diagnose and treat
FASD.
• Recognize and deal with the continuum, not just
the extremes of FASD.
• Actively screen for alcohol use in all patients
and give advice.
• Recognize medical issues of alcohol and all
personal, family and societal ramifications.
Some Solutions:
FASD Prevention
• Folic Acid should be added to all beverage
alcohol.
• Break the cycle. Properly fund addiction
intervention and rehabilitation programs.
• Identify women at risk of having children with
FASD and intervene.
• Meconium testing for Fatty Acid Ethyl Esters
should be mandatory for every birth.
• Intensive family and social service supports for
FASD and recovering alcoholics.
• Poverty is a result of, and breeds, substance
abuse. Deal with it.
Some Solutions:
Alcohol Vendors
• The beverage alcohol industry pays less than
1% of the total damages caused by their
products. Increase taxes on beverage alcohol.
• All tax revenue to be returned to support
rehabilitation programs and victims of alcohol.
• Remove all incentives for governments to
promote alcohol.
Some Solutions:
Alcohol Vendors
• End all government supports for beverage
alcohol industry, including "wine and beer
tourism".
• End all alcohol advertising.
• Alcohol must be served with food.
• Breathalyzers in all alcohol establishments.
• Ban alcohol sales incentives, contests, games.
• Ban "Happy Hour" discounted promotions. They
encourage binge drinking.
Some Solutions:
Public Education
• Educate the public that addiction is a
medical issue not a moral failure.
• Educate children from a very young age
about dangers of alcohol.
• Have youth design anti-alcohol programs
targeting youth.
• The ONLY purpose of beverage alcohol is
to make your brain take a hike.
Some Solutions:
Research
• Better diagnostic tools for the full range
of FASD damage.
• True incidence and scaling of FASD
damage.
• Chemically turn-off addiction center in
brain.
Prevention – The Birth to 3 Program
 Parent-child assistance program
 Intensive home visitation model for the highest risk
mothers
 Paraprofessional Advocates
 Paired with client for 3 years following the birth of the
target Baby
 Link clients with community services
 Extensively trained and closely supervised
 Maximum caseload of 15
 Outcomes
 Fewer alcohol/drug affected children
 Reduced foster care placement
 Reduced dependence on welfare
Grant, T.M., 1999; Ernst, C.C., et al. 1999
Discussion Topics
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FASlink Support
Family environment
Community healing
The Professionals
Addiction recovery
Medication
Calming techniques
Furniture safety
– Sleeping tent
• Early diagnosis
• Early intervention
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School intervention
Justice System
Careers
Financial Help
– Disability Income
– Special Services at
Home
– Disability Tax Credit
• Friendships
– Scouting
– School
– Music
FASlink
• provides Internet online information and
support resources for those dealing with
medical, legal and educational issues of
children prenatally exposed to alcohol.
FASlink
• FASlink serves parents (birth, foster,
adoptive and grandparents), caregivers,
adults with FAS, doctors, teachers, social
workers, lawyers, students, government
policy makers, and others whose lives are
touched by Fetal Alcohol Syndrome.
www.faslink.org
FASlink
• FASlink’s website serves more than
400,000 people annually.
• FASlink receives about 100 letters per day
to be shared with the members through the
FASlink Discussion Forum.
FASlink
• The FASlink Archives are an online
searchable database of more than 100,000
letters and articles on FASD issues.
• It is the largest FASD resource in the
world.
FASlink provides:
• Information, advocacy and support services
for individuals and families dealing with
FASD
• Education of professionals (medical,
educational, social services and justice)
• Electronic publishing of Internet and
CDROM based FAS information and tools
FASlink provides:
• Initiatives in public information and education
• Monitoring of company, governmental and
NPO activities, research and legislation that
may affect FAS individuals.
 International co-operation and support
 Concept development for long-term care
options.
FASlink provides:
 Initiatives for the development of diagnostic
clinics
 Concept development for rehab facilities for
pregnant substance abusers and their
dependant children.
 Development of alternatives to justice system
incarceration for individuals with prenatal brain
injury.
FASD is 100% Preventable
www.faslink.org