fa slink small

7/28/2019 Fa Slink Small

1/86

2448 Hamilton Road, Bright's Grove, Ontario N0N 1C0Phone: (519) 869-8026 E-Mail: [email protected] Website: www.faslink.org

FASlinkFetal Alcohol Disorders Society
mailto:[email protected]:[email protected]


2/86

Dont Ask My Child to Fly Bruce Ritchie 1997


3/86

for he has not wings.

Don't ask my child to fly,

.


4/86

Don't ask my child to remaincalm amid the din,

for her ability to screen out thenoises has been taken away.


5/86

Don't ask my child to becareful with "strangers",

for he is affectionate with everyone andprey for the unscrupulous.

.


6/86

Don't ask my child to "settledown",

for the clock which works for you and I,

does not exist for her.


7/86

Don't ask my child to notplay with the toys of others,

for he has no conceptof property.


8/86

Dont ask my child to

remember you tomorrow,although you met today.

.


9/86

Don't ask my child to heal

your wounds,for her hands cannot hold a

scalpel or sutures.


10/86

Don't ask my child to meet the

challenges set by society,for you have denied her the tools..


11/86

Don't ask my child to forgive

you for standing idly by,

while he was in trouble in his

mother's womb,

.


12/86

for he will,

but He may not.


13/86

An individuals place, and

success, in society is almostentirely determined by

neurological functioning.


14/86

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.


15/86

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?


16/86

"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


17/86

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


18/86

There is no safe level ofalcohol consumption during

pregnancy.

.


19/86

FASD is 100% Preventable

www.faslink.org


20/86

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.


21/86

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.


22/86

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.


23/86

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.


24/86


25/86

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.


26/86

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.


27/86

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)


28/86

Incidence

Approximately 20% of Canadian schoolage children are receiving special

education services, most for conditionsof the types known to be caused byprenatal alcohol exposure.


29/86

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.)


30/86

Effects of Alcohol as a Teratogen on the Baby


31/86

Brain damage resulting from

prenatal alcohol

photo: Clarren, 1986


32/86

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.


33/86

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.


34/86

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


35/86

Early diagnosis can help prevent

secondary disabilities such as

mental health problems

dropping out of school

trouble with the law and substance abuse.


36/86

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.


37/86

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


38/86

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


39/86

Little or no capacity for interpersonal

empathy Sociopathic behaviour

Epilepsy

Tremors Cerebral palsy

Renal failure

Asthma

Complex seizure disorder


40/86

Developmental speech and language

disorder

Developmental delay

Height and weight deficiencies

Tight hamstrings

Cognitive perseveration

Echolalia

Autistic traits Rigidity

Sleep disorder


41/86

Developmental coordination disorder Adaptive esotropia

Tourette's traits

Central auditory processing disorder

Night terrors

Precocious puberty

Social problems


42/86

Depression

Reactive outbursts

Heart defects Heart failure

Suicide

Death


43/86

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


44/86


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


45/86


30% Pigeon Chest

7% Concave chest

7% Cleft palate 44% Spinal dimple

12% Hernia

35% Hairgrowth on back of neck


46/86

Without diagnosis, FASD can

create a number of secondary

disabilities.


47/86


48/86


49/86


50/86

The Right Hemisphere

deals with holistic functioning

processing of images, sound, touch, for a "holistic" picture.

Memory here is visual, auditory and

spatial.


51/86

So, the Left side is logic, facts,rules.

The Right side is sensory input

and reactive.


52/86

The Corpus Callosum

connects right and left sides to allow

communication between the hemispheres.


53/86

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.


54/86


55/86

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


56/86

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.


57/86

However, because individuals with

ARND / FAE "look normal" they are

expected to perform normally. Theseissues lead to secondary disabilities.


58/86

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.


59/86

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


60/86

You cannot cure brain injury with

punishment.

It is useless and cruel to punishsomeone for having been born with a

disability.


61/86

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.


62/86

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


63/86

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.


64/86

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.


65/86


66/86

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


67/86


68/86

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


69/86

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.)


70/86

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:


71/86

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:


72/86

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:


73/86

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.


74/86

Some Solutions:


75/86

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:


76/86

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.


77/86

Discussion Topics


78/86

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


79/86


80/86

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


81/86

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.


82/86

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


83/86

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:


84/86

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:


85/86

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.


86/86

fa slink small

Documents