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2448 Hamilton Road, Bright's Grove, Ontario N0N 1C0Phone: (519) 869-8026 E-Mail: [email protected] Website: www.faslink.org
FASlinkFetal Alcohol Disorders Society
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Dont Ask My Child to Fly Bruce Ritchie 1997
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for he has not wings.
Don't ask my child to fly,
.
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Don't ask my child to remaincalm amid the din,
for her ability to screen out thenoises has been taken away.
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Don't ask my child to becareful with "strangers",
for he is affectionate with everyone andprey for the unscrupulous.
.
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Don't ask my child to "settledown",
for the clock which works for you and I,
does not exist for her.
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Don't ask my child to notplay with the toys of others,
for he has no conceptof property.
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Dont ask my child to
remember you tomorrow,although you met today.
.
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Don't ask my child to heal
your wounds,for her hands cannot hold a
scalpel or sutures.
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Don't ask my child to meet the
challenges set by society,for you have denied her the tools..
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Don't ask my child to forgive
you for standing idly by,
while he was in trouble in his
mother's womb,
.
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for he will,
but He may not.
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An individuals place, and
success, in society is almostentirely determined by
neurological functioning.
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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 damagein children is prenatal exposure to alcohol.
These children grow up to become adults.
Often the neurological damage goes
undiagnosed, but not unpunished.
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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) areall names for a spectrum of disorderscaused when a pregnant woman consumesalcohol.
What is FASD?
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"Of all the substances of abuse, includingheroin, cocaine, and marijuana, alcohol
produces by far the most serious
neurobehavioral effects in the fetus.
--Institute of Medicine 1996 Report to Congress
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GeneticsEthanol alone wasfound to interact
with over 1000genes and cellevents.
Ethanol responsivegenes directlyregulate and are
themselves regulatedby the activity ofother proteins andcell processes.
Uddin RK, Treadwell JA, Singh SM
Department of Biology and Division of Medical
Genetics, The University of Western Ontario
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There is no safe level ofalcohol consumption during
pregnancy.
.
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FASD is 100% Preventable
www.faslink.org
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Legally intoxicated is defined as a BloodAlcohol Level (BAL) of .08%.
Permanent brain cell damage begins at aBAL of .07%.
A 100 lb (45 kg) female consuming 5standard 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 80proof liquor, or 4 oz. glass of regular tablewine.
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Statistics Canada, Canadian
Community Health Survey, 2000/01 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 34consumed 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 peryear.
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Prenatal Alcohol Exposure
37% of babies have been exposed tomultiple binges (5+ drinks/session), oftenbefore the girl knew she was pregnant.
Another 42% are exposed to multiple sessionsof 1 to 4 drinks per occasion.
15%to18% continue to drink throughoutthe pregnancy, 4% at elevated levels.
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Maternal prenatal alcoholconsumption even at low levels isadversely related to child behavior.
The effect was observed at averageexposure levels as low as 1 drink perweek.
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FASD is so grossly under-reported
that the traditional FAS statisticsare almost meaningless.
Very few doctors have received anytraining in diagnosing FASD
Many will not diagnose FASD for fearof stigmatizing the child and/or themother.
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FASD is not a threshold condition.
FASD is a continuum ranging from mildintellectual and behavioural issues to theextreme that often leads to profound
disabilities or premature death.
It is somewhere in the middle of thecontinuum that the issues attract the
attention of parents, educators, medicaland social work professionals, andeventually the justice system.
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Incidence
Most of the issues that attractsufficient attention are behavioural and
performance issues.
"The most outstanding characteristics
of FAS are bad judgment and theinability to make the connection betweenan act and its consequences."(Streissguth, AP)
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Incidence
Approximately 20% of Canadian schoolage children are receiving special
education services, most for conditionsof the types known to be caused byprenatal alcohol exposure.
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Alcohol as a teratogen
Foolish, drunken, orharebrain women most
often bring forthchildren like untothemselves
Aristotle in Problemata
Behold, thou shaltconceive and bear a son:And now, drink no wineor strong drink.
Judges 13:7 (1070 B.C.)
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Effects of Alcohol as a Teratogen on the Baby
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Brain damage resulting from
prenatal alcohol
photo: Clarren, 1986
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Alcohol is toxic at all concentrations
Damage varies due to volume ingested,timing during pregnancy, peak bloodalcohol levels, genetics, mothers healthand nutrition, and environmental factors.
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FASD is a lifetime disability
It is not curable. A child does not "growout of it".
However, early diagnosis and intensive,and appropriate, intervention can make
an enormous difference in the prognosisfor the child.
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FASOnly the tip of the iceberg
Fetal Alcohol Syndrome
Partial Fetal AlcoholSyndrome Alcohol Related
Neurodevelopmental
Disabilities Alcohol Related Birth
Defects Clinically suspect but
appear normal Normal, but never reach
their potential
Adapted from Streissguth
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Early diagnosis can help prevent
secondary disabilities such as
mental health problems
dropping out of school
trouble with the law and substance abuse.
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Parents often find that their ability
to cope with the child's behaviorchanges dramatically when they
understand that the problems are
most likely based on organic
brain damage, rather than the
child's choice to be inattentive oruncooperative.
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Prenatal alcohol
damage can include: 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
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Immune system malfunctioning
Behavioral problems
Attention deficit disorders
ADD/ADHD
Extreme impulsivenessPoor judgement
Little or no retained memory
Deafness
Little or no capacity for moral judgement
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Little or no capacity for interpersonal
empathy Sociopathic behaviour
Epilepsy
Tremors Cerebral palsy
Renal failure
Asthma
Complex seizure disorder
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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
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FAS Physical Abnormalities
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
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FAS Physical Abnormalities
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
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FAS Physical Abnormalities
30% Pigeon Chest
7% Concave chest
7% Cleft palate 44% Spinal dimple
12% Hernia
35% Hairgrowth on back of neck
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Without diagnosis, FASD can
create a number of secondary
disabilities.
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The Right Hemisphere
deals with holistic functioning
processing of images, sound, touch, for a "holistic" picture.
Memory here is visual, auditory and
spatial.
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So, the Left side is logic, facts,rules.
The Right side is sensory input
and reactive.
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The Corpus Callosum
connects right and left sides to allow
communication between the hemispheres.
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The Right side senses input,checks with the Left side tosee if there are rules to dealwith this pattern of input,
integrates the storedinformation and reacts in amodified way.
Damage to any of these systems causesvery poor, impulsive and inappropriateresponse.
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FAS (Fetal Alcohol Syndrome)
individuals have a distinctivephysical 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
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While individuals with FAE (Fetal AlcoholEffects) / ARND (Alcohol Related
Neurodevelopmental Disabilities) may
lack the outward physical appearance ofalcohol damage, the internal damage to
the brain and other organs can be just as
serious as FAS with the outward physical
appearance features.
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However, because individuals with
ARND / FAE "look normal" they are
expected to perform normally. Theseissues lead to secondary disabilities.
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Individuals with ARND / FAE
between the ages of 12 and 51:
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.
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Individuals with ARND / FAE
between 21 and 51:
more than 50% of males and 70% of
females will have alcohol and drugproblems;
82% will not be able to live independently;
70% will have problems with employment
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You cannot cure brain injury with
punishment.
It is useless and cruel to punishsomeone for having been born with a
disability.
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Costs of FASD:
Each individual with FAS individual costs thetaxpayer 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 byprenatal alcohol exposure.
It costs approximately $120,000/yearto imprisona Young Offender and $82,000 foran adultoffender.
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Add on:
the lifetime loss of income
the high costs to the families (foster,
adoptive or biological) who raise andcare for children and adults with FASD
the lost income of a parent who must
care for the exceptionally high needs ofa child with FASD
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Add on:
the costs to families whose child with FASD is
permanently dependent upon them
the costs of legal services for defending theirchild in the courts
the cost of stress caused divorce, etc.
The list goes on and on.
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Demonstration
Break a raw egg into a wine glass. Add
one ounce of alcohol. Watch the clearpart develop white streaks as the
alcohol "cooks" it.
That is your baby's brain on alcohol.
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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 ofdevelopment which seems to rule out
mental retardation
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looks through people
frequently unaware of surroundings andmay 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 oftime
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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.)
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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 livingsituations and in making generalizations
Some Solutions:
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Some Solutions:Medical Education
Teach physicians and other healthprofessionals to screen, diagnose and treatFASD.
Recognize and deal with the continuum, not justthe 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:
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Some Solutions:FASD Prevention
Folic Acid should be added to all beveragealcohol.
Break the cycle. Properly fund addiction
intervention and rehabilitation programs. Identify women at risk of having children withFASD and intervene.
Meconium testing for Fatty Acid Ethyl Estersshould be mandatory for every birth.
Intensive family and social service supports forFASD and recovering alcoholics.
Poverty is a result of, and breeds, substanceabuse. Deal with it.
Some Solutions:
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Some Solutions:Alcohol Vendors
The beverage alcohol industry pays less than1% of the total damages caused by their
products. Increase taxes on beverage alcohol.
All tax revenue to be returned to supportrehabilitation programs and victims of alcohol.
Remove all incentives for governments topromote alcohol.
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Some Solutions:
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Some Solutions:Public Education
Educate the public that addiction is amedical issue not a moral failure.
Educate children from a very young ageabout 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:
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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 inbrain.
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Discussion Topics
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Discussion Topics FASlink Support
Family environment Community healing
The Professionals
Addiction recovery
Medication
Calming techniques
Furniture safety
Sleeping tent
Early diagnosis
Early intervention
School intervention
Justice System Careers
Financial Help
Disability Income
Special Services at
Home
Disability Tax Credit
Friendships Scouting
School
Music
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FASlink
FASlink serves parents (birth, foster,
adoptive and grandparents), caregivers,
adults with FAS, doctors, teachers, social
workers, lawyers, students, governmentpolicy makers, and others whose lives are
touched by Fetal Alcohol Syndrome.
www.faslink.org
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FASlink
FASlinks website serves more than
400,000 people annually.
FASlink receives about 100 letters per dayto be shared with the members through the
FASlink Discussion Forum.
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FASlink
The FASlink Archives are an online
searchable database of more than 100,000letters and articles on FASD issues.
It is the largest FASD resource in the
world.
FASli k id
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FASlink provides:
Information, advocacy and support servicesfor 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 pro ides:
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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:
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FASlink provides:
Initiatives for the development of diagnosticclinics
Concept development for rehab facilities for
pregnant substance abusers and their
dependant children.
Development of alternatives to justice systemincarceration for individuals with prenatal brain
injury.
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