Presentation on theme: "Identifying and Preventing Fetal Alcohol Spectrum Disorders (FASD): A Hidden Cause of Relapse in Women As Well As Behavioral and Cognitive Problems in."— Presentation transcript:
Identifying and Preventing Fetal Alcohol Spectrum Disorders (FASD): A Hidden Cause of Relapse in Women As Well As Behavioral and Cognitive Problems in Their Offspring Kathleen Tavenner Mitchell, MHS, LCADC Vice President National Organization on Fetal Alcohol Syndrome
Prenatal Alcohol Exposure can cause Lifelong Brain Damage FASD is the leading known cause of preventable mental retardation and is a leading cause of birth defects and learning and behavioral disorders
COMPARISON OF CONGENTIAL EFFECTS FROM ALCOHOL AND DRUGS Adapted from Morris et al,
NOFAS Vision The vision of the National Organization on Fetal Alcohol Syndrome (NOFAS) is a global community free of alcohol-exposed pregnancies and a society supportive of individuals already living with Fetal Alcohol Spectrum Disorders (FASD)
What Does NOFAS Provide? Public Awareness Media Outreach Media OutreachPSA Awareness Campaigns Youth Education Youth Education Professional Education Curricula Curricula Provider training Provider training Advocacy Government Affairs Advisory Constituent Services Affiliate Network Birth Mom Network Support Groups ConsultationReferral
FASD: AN UNEXAMINED CAUSE OF ADDICTION RELAPSE Women that have used during pregnancy have severe guilt and shame that needs to be addressed in order to prevent relapse Women that have children with unidentified FASD are at high risk for relapse due to the behaviors of their children and the belief that they are poor parents Women that were exposed to alcohol prenatally may have FASD putting them at high risk for relapse
FASD Prevention and Intervention Should be a PRIORITY in Addiction Treatment Early identification of children with FASD can reduce secondary disabilities and improve outcomes for future success Women with addictive diseases are at very high risk for having children with FASD Women who drank during one pregnancy are likely to drink during all pregnancies FASD is a preventable disorder that has lifelong implications!!!
Increased sibling mortality in children with FAS Study compared the rate of all causes of mortality in siblings of children diagnosed with FAS with the siblings of matched controls The siblings of children with FAS had increased mortality (11.4%) compared with matched controls (2.0%), a 530% increase in mortality Siblings of children with FAS had increased risk of death due to infectious illness and SIDS A diagnosis of FAS is an important risk marker for mortality in siblings even if they do not have FAS Maternal alcoholism appears to be a useful risk marker for increased mortality risk in diagnosed cases and their siblings Authors: Burd L.; Klug M.; Martsolf 2004 Authors: Burd L.; Klug M.; Martsolf 2004
Substance Use in Pregnancy More than 130,000 pregnant women per year in the US consume alcohol at risk levels 1 in 30 women who know they are pregnant report “risk drinking”
16-to-24-year-old American Women and Alcohol After drinking alcohol: One in five have had sex that they regretted One in 10 have been unable to remember if they had sex the night before One in seven women have had unprotected sex and engage in “risk drinking” Birth defects associated with alcohol exposure can occur before a woman knows she is pregnant Birth defects associated with alcohol exposure can occur before a woman knows she is pregnant Nearly 85% of teen pregnancies are unplanned Nearly 85% of teen pregnancies are unplanned National Clearinghouse for Alcohol and Drug Information
Social Differences Physicians Enable Frequent misdiagnosis Frequent misdiagnosis Less likely to be screened for alcohol problemsLess likely to be screened for alcohol problems CASA reports that only 6% of physicians routinely talk to women about alcohol use CASA reports that only 6% of physicians routinely talk to women about alcohol use Over-prescribing, or inappropriate prescribing addictive substancesOver-prescribing, or inappropriate prescribing addictive substances
Is Alcoholism Really a Disease? Is Alcoholism Really a Disease? Alcoholism is defined as a primary, chronic disease with genetic, psychosocial, and environmental factors influencing its development and manifestations
Stage 1 Tolerance Stage 2 Physical Dependency Stage 3 Major Organ Change high tolerance with occasional use increased tolerance/possible a.m. use possible daily or maintenance use (reduced tolerance) occasional hangovers withdrawal: headaches/nausea (anorexia, high BP, loss of concentration, weakness) migrainesVomiting rapid pulse, BP disorientation disrupted sleep patterns sleeplessness insomnia insomnia colds/infections disease pathology developing major organ damage irritability-mood swings-mild depression- isolation MH diagnosis (depression, anxiety, panic) institutions and rx suicidal ideation or attempts K. Mitchell, 2004 K. Mitchell, 2004 Progression of Alcoholism
Stage 1 Tolerance Stage 2 Physical Dependency Stage 3 Major Organ Change memories of how nice use was preoccupation/ craving use despite consequences one-two gateway drugs variety of drug use multiple drug addictions mild tremors intentional tremors seizures or D.T’s sexual pleasure sexual problems impotence family problems school & work problems loss of family, job & school trouble with the law (close calls) DWI-DUI / possession incarcerations K. Mitchell, 2004
Myth: An addict will not go into treatment until they have hit bottom Truth: An addict lives on an emotional bottom, we just need to take the time to tell them
Our Families Journey Through Addiction, Denial and Recovery
1977 Karli, Danny and Erin A Happy Little Hippy Family
Karli age 10 (diagnosed with cerebral palsy)
Our Family Process: o Years of frustration and misdiagnosis o Years of believing that Karli was not trying her best o Believing that Karli would “grow out of it” o Received Diagnosis of FAS for Karli (16 year of age)
Acceptance Phase o Survival: Do or Die! o Catapulted into Process of Recovery
Karli at 16 Receives Diagnosis of FAS New house rules: No discussing what Karli cannot do! The focus changed to what Karli could do: Great artist! Friendly to everyone Wants to be helpful Everyone likes Karli 100% pure of heart, Holy Would not hurt another person-ever! Really wants your approval Great with the elderly and individuals with severe handicapping conditions
Karli possessed a natural ability for spiritual simplicity! Maybe she was here to teach us??… The glass was now half full!!
“We are not human beings having a spiritual experience, rather spiritual beings having a human experience.” Pierre Teihard de Chardin
Individuals with FASD make Powerful Advocates!
2 Things Necessary for Life: water women
Screen All Women of Childbearing Age for Alcohol Use Be conversational during screening Be non-judgmental Listen to her, both verbal and non-verbal Stay positive-refrain from negative comments or reactions Focus on her health and her babies Consider issues such as illiteracy, poverty or abuse Compliment her
Day’s Study: Light-to-Moderate Prenatal Alcohol Exposure Can Negatively Effect Cognitive Abilities of Child Examined prenatal substance use among 611 mother-child pairs in a prenatal clinic from 1983 to 1985 Children examined several times throughout the child’s early life, at age 10 cognitive ability was assessed The study noted that even light to moderate drinking during pregnancy can affect IQ, and that the effects of prenatal alcohol exposure on IQ were worse for children exposed to alcohol through the second trimester IQ is a measure of a child’s ability to learn and survive in his or her own environment-ideally predicting the child’s abilities and potential for success in school and everyday activities Willford, Jennifer A., Sharon L. Leech, and Nancy L. Day. "Moderate Prenatal Alcohol Exposure and Cognitive Status of Children At Age 10." Alcoholism: Clinical and Experimental Research 30 (2006):
Opportunity Pregnancy is an opportunity for change Women who are pregnant are more receptive to intervention programs and treatment than women who are not currently pregnant
Discuss Birth Experiences with Women: Red Flags: Two or more miscarriages? Stillbirths? Infant/child deaths (SIDS)? Children with LD, ADHD, MH or behavioral disorders? Children diagnosed with FASD? Positive response to any of the above questions should warrant a screening of all children for possible FASD (where substance use is known or suspected) K Mitchell, 2004 K Mitchell, 2004
Women identify the top three barriers to addiction treatment 39% said the inability to admit the problem is severe enough to warrant treatment (denial) 32% said the lack of emotional support for treatment from family members 28% inability to provide adequate care for children 2002 Caron Foundation
Locate Treatment that provides Feminine Focused Recovery: Address the unthinkable: Sexuality Biological differences Menstruation Abuse Substance use during pregnancy and possible consequences Secrets Desires, dreams and fantasies Basic needs: transportation, childcare, etc.
Recovery begins when we: Change thinking: From linear to circular
Characteristics of Chemically Dependent Families Family rules are rigid or non-existent Inconsistent, arbitrary, irrational Inconsistent, arbitrary, irrational Stress related illness is common Colitis, migraine headaches, ulcers, gastrointestinal disorders Colitis, migraine headaches, ulcers, gastrointestinal disorders Denial is present on every level Compulsive behaviors appear to defend against the stress Overeating, oversleeping, overworking, spending, gambling, exercising, achieving Overeating, oversleeping, overworking, spending, gambling, exercising, achieving The patterns will continue in new family system
Characteristics of Chemically Dependent Families Blaming and defensiveness Used as a means of coping and avoiding pain Used as a means of coping and avoiding pain Isolation despite the appearance of enmeshment There may be no emotional connection between them There may be no emotional connection between them Feelings are not expressed openly or appropriately Pain, anger sadness or hurt may be discounted Pain, anger sadness or hurt may be discounted Role transfers Children acting parents and parents acting as dependent children Children acting parents and parents acting as dependent children
Rescuing Someone From Addiction: Relationships Consider physically separating from partner/family Consider physically separating from partner/family Teach detachment skills Teach detachment skills Enabling Remove client from enabling family members Remove client from enabling family members Investigate “love verses enabling” Investigate “love verses enabling” COA/ACOA issues Educate on effects on family Educate on effects on family Relapse clients: address these early on Relapse clients: address these early on
Ways to Destroy the Culprit ( Codependency) Perfectionism 3 P’s (perfectionism, procrastination, paralysis) 3 P’s (perfectionism, procrastination, paralysis) Vocabulary Change “I can’t” to “I choose not to” or “I won’t” Change “I can’t” to “I choose not to” or “I won’t” Decision making Make everyday decisions Make everyday decisions Choices Every action is a chosen action Every action is a chosen action
Teach H.A.L.T. 3-6 Meals a Day Exercise (walking) 8-9 Hours of Sleep (naps okay!) Practice Prayer and meditation Talk to sponsor, be around positive people
Communication Skills: I can’t to I won’t Saying NO: Setting Boundaries Assertiveness
Client’s with a Child with FASD Extreme shame Grief Stigma Self-esteem Acceptance
Referral for Assessments: Diagnostic evaluation Ongoing assessments Medical Medical Mental health Mental health Occupational and physical therapy Occupational and physical therapy Speech and language Speech and language IQ and academic achievement IQ and academic achievement
Strategies for Helping Children with FASD Modify child’s environment: Structure * Routine * Repetition * Support Use literal, concrete language and check for understanding Do not isolate the child Potential child abuse
Parenting Strategies Strategies that have been modeled on other developmental disabilities Often, children are already receiving services; make sure they are the correct services Often, children are already receiving services; make sure they are the correct services
Education, Direction, and Support for Families/Caregivers Educate about FASD Assist families to change family paradigm “Johnny is lazy” to “Johnny’s brain does not allow him to understand things easily” Long-term support: family counseling, support groups
Ongoing Case Management Future support for child Respite care Possible kinship care Possible foster care placement
Help Women to Change Their Belief Systems: Maybe I Could Experience Good Things in Life? Encourage her to nourish, giggle, hug, create, take risks, massage and to sit and listen and you will witness a BEAUTIFUL SOUL BLOOM ! Encourage her to nourish, giggle, hug, create, take risks, massage and to sit and listen and you will witness a BEAUTIFUL SOUL BLOOM ! Hello SOUL-SELF!
Carl Jung’s theory of synchronicity: We are all connected and intertwine with perfect timing. There is a reason for everything. There are no mistakes!
Children with FASD grow up; we treat them in our human service agencies
University of Washington Fetal Alcohol and Drug Unit In a study that examined 415 persons with FASD between the ages 6-61, Dr. Ann Streissguth found:
Potential “Secondary Disabilities” mental health problems (90%) disruptive school experience (60%) trouble with law (60%) confinement (50%) inappropriate sexual behavior (50%) alcohol/drug problems (30%) dependent living (80%) employment problems (80%)
Identifying Clients with FASD Assessments to include: Recidivist client?Recidivist client? Tell me about your birth experience, what was your birth weight?Tell me about your birth experience, what was your birth weight? Any infant/childhood health issues? Ear infections as an infant?Any infant/childhood health issues? Ear infections as an infant? Did your mom drink, was she an alcoholic?Did your mom drink, was she an alcoholic? Were you raised in foster care? Adopted?Were you raised in foster care? Adopted? Any developmental, learning issues? Ever in special ed?Any developmental, learning issues? Ever in special ed? What was your best subject in school? Reading? Math?What was your best subject in school? Reading? Math? Ever diagnosed with ADD or any other MH disorders? Which one’s?Ever diagnosed with ADD or any other MH disorders? Which one’s?
Behavioral profile of FASD Reduced IQ Learning deficits Increased activity and reactivity Perseverative Attentional deficits Poor fine and gross motor skills Developmental delays Feeding issues Hearing deficits Sensory integration
Adults with FASD Naïve Victimization Poor judgment-easily led Poor $ and time management Difficulties with independence Mental health disorders
Case Management Considerations: Systems Problem Input information Processing (organization, storage and retrieval) of information Output information
Be Innovative and Creative Follow your intuition Watch the client and learn from the messages she sends Re-Think the System How can we adapt our services to better serve this client?
Think Younger: Strengths and limitations Inconsistent abilities Issues related to chronological vs. developmental age
Meeting Sessions: Set appropriate boundaries Focus on client’s strengths Address the stigma associated with FASD Focus on self-esteem and personal issues Address resistance, denial, and acceptance Provide hope Remind client that you are staying with her
Expect and Be Prepared For: Inconsistent behaviors Problems with perception and de-coding information Problems with decision making May not understand time Impulsiveness Poor judgment Distinguishing between public and private behaviors Frustration with transitions Easily led Need for increased 1:1 sessions Need for a mentor or “buddy”
Communication Check often for client understanding Review written materials Repeat information Use simple, concrete language Present ideas or instructions one at a time
K.I.S.S. Short term goals Limit cognitive assignments Constant monitoring of information comprehension Speak the same language Address issues of loss, trust, and abuse
Accepting their disability Help client recognize their disability in reasoning, judgment and memory Help client understand that everyone has strengths and weaknesses Accept client for who they are “today”-not who they will be if they do this and that Ignore some of their “issues/difficulties” Recognize their effort to improve
Counseling Clients with FASD Remember: They will be skilled at reading your expressions to determine the response you expect Consider the source, while forming opinions of family/spouse/friends or circumstances being reported Much of what you say to client will probably be misunderstood and misrepresented to family peers
Stay with Client: If a technique is not successful, try something new (ADAPT THE SYSTEM OF CARE) They can learn with lots of repetition and support 12 Step recovery works for clients with addictions Use direct eye contact (unless this produces anxiety), repeat things and use short term instructions FOLLOW YOUR INTUITION!
Adult Clients with FASD Long term case management vocational rehabilitation (job coaches) vocational rehabilitation (job coaches) reproductive health (appropriate birth control) reproductive health (appropriate birth control) transition planning transition planning housing housing peer/recreational involvement peer/recreational involvement Developmental disability services Medicare/caid Medicare/caid Supplemental Security Income (SSI)
Identify or Create “Natural” Connections Community Connections: Family: sisters, mothers, grandmothers, daughters, grand daughters AA/NA Women’s meetings, women’s retreats Women Circle’s/Clubs/Meetings Artist way meetings, inner child groups, quilting Spiritual Communities Social Activities Health Club/Physical Activities Clubs for Adults with Disabilities Art or yoga classes
Issues Facing Families Affected by FASD Role of family in preventing alcohol-exposed pregnancies Need for family to accept client’s disability Anger toward birth mother
Family Materials: Guides and Books NOFAS Parent Handbook: Fetal Alcohol Syndrome:Practical Suggestions and Support for Families and Caregivers, NOFAS, Kathleen Tavenner Mitchell,2002. NOFAS Parent Handbook: Fetal Alcohol Syndrome:Practical Suggestions and Support for Families and Caregivers, NOFAS, Kathleen Tavenner Mitchell,2002. The Challenge of Fetal Alcohol Syndrome: Overcoming Secondary Disabilities, Streissguth, Ann The Challenge of Fetal Alcohol Syndrome: Overcoming Secondary Disabilities, Streissguth, Ann Videos Recovering Hope: Mothers speak out about Fetal Alcohol Spectrum disorders, SAMHSA, FASD Center for Excellence, 2004 order at Recovering Hope: Mothers speak out about Fetal Alcohol Spectrum disorders, SAMHSA, FASD Center for Excellence, 2004 order at Fetal Alcohol Spectrum Disorders: An Overview, NOFAS. Fetal Alcohol Spectrum Disorders: An Overview, NOFAS. Iceberg: Iceberg: Notes from NOFAS: Notes from NOFAS: Toolkit for Parents and Caregivers, available through NOFAS Toolkit for Parents and Caregivers, available through NOFAS NOFAS
A Matter of Ethics Important to get an accurate diagnosis so that treatment plans can be tailored Need to refer children for evaluation as raising a child with an FASD can affect recovery Need to be sensitive when discussing FASD with clients