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2448 Hamilton Road, Bright's Grove, Ontario N0N 1C0 Phone: (519) 869-8026 Website: FASlink Fetal.

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Presentation on theme: "2448 Hamilton Road, Bright's Grove, Ontario N0N 1C0 Phone: (519) 869-8026 Website: FASlink Fetal."— Presentation transcript:

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

2 Dont Ask My Child to Fly © Bruce Ritchie 1997

3 for he has not wings. Don't ask my child to fly,.

4 Don't ask my child to remain calm amid the din, for her ability to screen out the noises has been taken away.

5 Don't ask my child to be careful with "strangers", for he is affectionate with everyone and prey for the unscrupulous..

6 Don't ask my child to "settle down", for the clock which works for you and I, does not exist for her..

7 Don't ask my child to not play with the toys of others, for he has no concept of property.

8 Dont ask my child to remember you tomorrow, although you met today..

9 Don't ask my child to heal your wounds, for her hands cannot hold a scalpel or sutures.

10 Don't ask my child to meet the challenges set by society, for you have denied her the tools..

11 Don't ask my child to forgive you for standing idly by, while he was in trouble in his mother's womb,.

12 for he will, but He may not.

13 An individuals place, and success, in society is almost entirely determined by neurological functioning.

14 A neurologically injured child is unable to meet the expectations of parents, family, peers, school and career and can endure a lifetime of failures.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.The largest cause of neurological damage in children is prenatal exposure to alcohol. These children grow up to become adults.These children grow up to become adults. Often the neurological damage goes undiagnosed, but not unpunished.Often the neurological damage goes undiagnosed, but not unpunished.

15 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. What is FASD?

16 "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

17 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

18 There is no safe level of alcohol consumption during pregnancy..

19 FASD is 100% Preventable www.faslink.org

20 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.

21 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.

22 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.

23 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.

24 Alcohol Startle Response 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. Ultrasound image of fetus when exposed to alcohol

25 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.

26 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.

27 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)

28 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.

29 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.)

30 Effects of Alcohol as a Teratogen on the Baby

31 Brain damage resulting from prenatal alcohol photo: Clarren, 1986

32 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.Damage varies due to volume ingested, timing during pregnancy, peak blood alcohol levels, genetics, mothers health and nutrition, and environmental factors.

33 FASD is a lifetime disability It is not curable. A child does not "grow out of it".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.However, early diagnosis and intensive, and appropriate, intervention can make an enormous difference in the prognosis for the child.

34 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

35 Early diagnosis can help prevent secondary disabilities such as mental health problemsmental health problems dropping out of schooldropping out of school trouble with the law andtrouble with the law and substance abuse.substance abuse.

36 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.

37 Prenatal alcohol damage can include: Loss of intellectual functioning (IQ)Loss of intellectual functioning (IQ) Mild to severe vision problemsMild to severe vision problems Dangerously high pain toleranceDangerously high pain tolerance Severe loss of intellectual potentialSevere loss of intellectual potential Mental RetardationMental Retardation DyslexiaDyslexia Serious maxilo-facial deformitiesSerious maxilo-facial deformities Dental abnormalitiesDental abnormalities Cleft palateCleft palate

38 Immune system malfunctioningImmune system malfunctioning Behavioral problemsBehavioral problems Attention deficit disordersAttention deficit disorders ADD/ADHDADD/ADHD Extreme impulsivenessExtreme impulsiveness Poor judgementPoor judgement Little or no retained memoryLittle or no retained memory DeafnessDeafness Little or no capacity for moral judgementLittle or no capacity for moral judgement

39 Little or no capacity for interpersonal empathyLittle or no capacity for interpersonal empathy Sociopathic behaviourSociopathic behaviour EpilepsyEpilepsy TremorsTremors Cerebral palsyCerebral palsy Renal failureRenal failure AsthmaAsthma Complex seizure disorderComplex seizure disorder

40 Developmental speech and language disorderDevelopmental speech and language disorder Developmental delayDevelopmental delay Height and weight deficienciesHeight and weight deficiencies Tight hamstringsTight hamstrings Cognitive perseverationCognitive perseveration EcholaliaEcholalia Autistic traitsAutistic traits RigidityRigidity Sleep disorderSleep disorder

41 Developmental coordination disorderDevelopmental coordination disorder Adaptive esotropiaAdaptive esotropia Tourette's traitsTourette's traits Central auditory processing disorderCentral auditory processing disorder Night terrorsNight terrors Precocious pubertyPrecocious puberty Social problemsSocial problems

42 DepressionDepression Reactive outburstsReactive outbursts Heart defectsHeart defects Heart failureHeart failure SuicideSuicide DeathDeath

43 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 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

45 FAS Physical Abnormalities 30% Pigeon Chest 7% Concave chest 7% Cleft palate 44% Spinal dimple 12% Hernia 35% Hairgrowth on back of neck

46 Without diagnosis, FASD can create a number of secondary disabilities.

47 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.

48 The brain's Frontal Lobes control: judgement, inhibition, concentration, self- control, conscience, personality and emotional traits as well as cognition and memory, motor speech and movement skills.

49 The Left Hemisphere deals with language based memorydeals with language based memory logical interpretation of languagelogical interpretation of language mathematicsmathematics abstraction and reasoningabstraction and reasoning facts and rules (such as safety and social).facts and rules (such as safety and social).

50 The Right Hemisphere deals with holistic functioningdeals with holistic functioning processing of images, sound, touch,processing of images, sound, touch, for a "holistic" picture.for a "holistic" picture. Memory here is visual, auditory and spatial.Memory here is visual, auditory and spatial.

51 So, the Left side is logic, facts, rules. The Right side is sensory input and reactive.

52 The Corpus Callosum connects right and left sides to allow communication between the hemispheres.

53 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.

54 Corpus callosum abnormalities Mattson, et al., 1994; Mattson & Riley, 1995; Riley et al., 1995

55 Alcohol seriously damages the physical structures, "wiring" and brain chemistry.

56 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

57 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.

58 However, because individuals with ARND / FAE "look normal" they are expected to perform normally. These issues lead to secondary disabilities.

59 Individuals with ARND / FAE between the ages of 12 and 51: 95% will have mental health problems; 95% will have mental health problems; 68% will have "disrupted school experience"; 68% will have "disrupted school experience"; 68% will experience trouble with the law; 68% will experience trouble with the law; 55% will be confined in prison, drug or alcohol treatment centre or mental institution; 55% will be confined in prison, drug or alcohol treatment centre or mental institution; 52% will exhibit inappropriate sexual behaviour. 52% will exhibit inappropriate sexual behaviour.

60 Individuals with ARND / FAE between 21 and 51: more than 50% of males and 70% of females will have alcohol and drug problems; more than 50% of males and 70% of females will have alcohol and drug problems; 82% will not be able to live independently; 82% will not be able to live independently; 70% will have problems with employment 70% will have problems with employment

61 You cannot cure brain injury with punishment.You cannot cure brain injury with punishment. It is useless and cruel to punish someone for having been born with a disability.

62 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).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.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.It costs approximately $120,000/year to imprison a Young Offender and $82,000 for an adult offender.

63 Add on: the lifetime loss of income 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 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 the lost income of a parent who must care for the exceptionally high needs of a child with FASD

64 Add on: the costs to families whose child with FASD is permanently dependent upon them 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 costs of legal services for defending their child in the courts the cost of stress caused divorce, etc. the cost of stress caused divorce, etc. The list goes on and on. The list goes on and on.

65 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. 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.

66 Student Checklist learns a simple task but forgets quicklylearns a simple task but forgets quickly hurts others by biting, kicking, etc.hurts others by biting, kicking, etc. has not developed any friendshipshas not developed any friendships seems not to hear so a hearing loss is suspectedseems not to hear so a hearing loss is suspected frequently does not attend to social / environmental stimulifrequently does not attend to social / environmental stimuli does not use toys appropriatelydoes not use toys appropriately

67 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

68 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

69 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

70 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.)

71 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

72 Some Solutions: Medical Education Teach physicians and other health professionals to screen, diagnose and treat FASD.Teach physicians and other health professionals to screen, diagnose and treat FASD. Recognize and deal with the continuum, not just the extremes of FASD.Recognize and deal with the continuum, not just the extremes of FASD. Actively screen for alcohol use in all patients and give advice.Actively screen for alcohol use in all patients and give advice. Recognize medical issues of alcohol and all personal, family and societal ramifications.Recognize medical issues of alcohol and all personal, family and societal ramifications.

73 Some Solutions: FASD Prevention Folic Acid should be added to all beverage alcohol.Folic Acid should be added to all beverage alcohol. Break the cycle. Properly fund addiction intervention and rehabilitation programs.Break the cycle. Properly fund addiction intervention and rehabilitation programs. Identify women at risk of having children with FASD and intervene.Identify women at risk of having children with FASD and intervene. Meconium testing for Fatty Acid Ethyl Esters should be mandatory for every birth.Meconium testing for Fatty Acid Ethyl Esters should be mandatory for every birth. Intensive family and social service supports for FASD and recovering alcoholics.Intensive family and social service supports for FASD and recovering alcoholics. Poverty is a result of, and breeds, substance abuse. Deal with it.Poverty is a result of, and breeds, substance abuse. Deal with it.

74 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.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.All tax revenue to be returned to support rehabilitation programs and victims of alcohol. Remove all incentives for governments to promote alcohol.Remove all incentives for governments to promote alcohol.

75 Some Solutions: Alcohol Vendors End all government supports for beverage alcohol industry, including "wine and beer tourism".End all government supports for beverage alcohol industry, including "wine and beer tourism". End all alcohol advertising.End all alcohol advertising. Alcohol must be served with food.Alcohol must be served with food. Breathalyzers in all alcohol establishments.Breathalyzers in all alcohol establishments. Ban alcohol sales incentives, contests, games.Ban alcohol sales incentives, contests, games. Ban "Happy Hour" discounted promotions. They encourage binge drinking.Ban "Happy Hour" discounted promotions. They encourage binge drinking.

76 Some Solutions: Public Education Educate the public that addiction is a medical issue not a moral failure.Educate the public that addiction is a medical issue not a moral failure. Educate children from a very young age about dangers of alcohol.Educate children from a very young age about dangers of alcohol. Have youth design anti-alcohol programs targeting youth.Have youth design anti-alcohol programs targeting youth. The ONLY purpose of beverage alcohol is to make your brain take a hike.The ONLY purpose of beverage alcohol is to make your brain take a hike.

77 Some Solutions: Research Better diagnostic tools for the full range of FASD damage.Better diagnostic tools for the full range of FASD damage. True incidence and scaling of FASD damage.True incidence and scaling of FASD damage. Chemically turn-off addiction center in brain.Chemically turn-off addiction center in brain.

78 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

79 Discussion Topics FASlink Support Family environment Community healing The Professionals Addiction recovery Medication Calming techniques Furniture safety –Sleeping tent Early diagnosis Early intervention 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 School intervention Justice System Careers Financial Help –Disability Income –Special Services at Home –Disability Tax Credit Friendships –Scouting –School –Music

80 FASlink provides Internet online information and support resources for those dealing with medical, legal and educational issues of children prenatally exposed to alcohol.provides Internet online information and support resources for those dealing with medical, legal and educational issues of children prenatally exposed to alcohol.

81 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.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

82 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. 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.

83 FASlink The FASlink Archives are an online searchable database of more than 100,000 letters and articles on FASD issues.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.It is the largest FASD resource in the world. The FASlink Archives are an online searchable database of more than 100,000 letters and articles on FASD issues.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.It is the largest FASD resource in the world.

84 FASlink provides: Information, advocacy and support services for individuals and families dealing with FASDInformation, advocacy and support services for individuals and families dealing with FASD Education of professionals (medical, educational, social services and justice)Education of professionals (medical, educational, social services and justice) Electronic publishing of Internet and CDROM based FAS information and toolsElectronic publishing of Internet and CDROM based FAS information and tools Information, advocacy and support services for individuals and families dealing with FASDInformation, advocacy and support services for individuals and families dealing with FASD Education of professionals (medical, educational, social services and justice)Education of professionals (medical, educational, social services and justice) Electronic publishing of Internet and CDROM based FAS information and toolsElectronic publishing of Internet and CDROM based FAS information and tools

85 FASlink provides: Initiatives in public information and educationInitiatives in public information and education Monitoring of company, governmental and NPO activities, research and legislation that may affect FAS individuals.Monitoring of company, governmental and NPO activities, research and legislation that may affect FAS individuals. International co-operation and support International co-operation and support Concept development for long-term care options. Concept development for long-term care options. Initiatives in public information and educationInitiatives in public information and education Monitoring of company, governmental and NPO activities, research and legislation that may affect FAS individuals.Monitoring of company, governmental and NPO activities, research and legislation that may affect FAS individuals. International co-operation and support International co-operation and support Concept development for long-term care options. Concept development for long-term care options.

86 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. 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.

87 FASD is 100% Preventable www.faslink.org


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