FASlink

Fetal Alcohol Disorders Society

2448 Hamilton Road, Bright's Grove, Ontario N0N 1C0 Phone: (519) 869-8026 E-Mail: info@faslink.org Website: www.faslink.org

Dont 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.

Dont 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 individuals 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?
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

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.

Uddin RK, Treadwell JA, Singh SM Department of Biology and Division of Medical Genetics, The University of Western Ontario

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

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, mothers 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:

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

Developmental coordination disorder Adaptive esotropia Tourette's traits Central auditory processing disorder Night terrors Precocious puberty Social problems

Depression Reactive outbursts Heart defects Heart failure Suicide Death

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

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

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

deals with language based memory logical interpretation of language mathematics abstraction and reasoning facts and rules (such as safety and social).

The Right Hemisphere

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:

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
FASlink Support Family environment Community healing The Professionals Addiction recovery Medication Calming techniques Furniture safety
Sleeping tent

School intervention Justice System Careers Financial Help

Disability Income Special Services at Home Disability Tax Credit

Friendships
Scouting School Music

Early diagnosis Early intervention

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
FASlinks 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