Identifying and Preventing Fetal Alcohol Spectrum Disorders (FASD):

1. 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

2. 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

3. COMPARISON OF CONGENTIAL EFFECTS FROM ALCOHOL AND DRUGS Adapted from Morris et al,

4. Fetal Alcohol Spectrum Disorders FAS ARND PFAS Fetal Alcohol Syndrome Partial FAS Alcohol-Related Neurodevelomental Disorder

5. 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)

6. What Does NOFAS Provide? • Advocacy Government Affairs Advisory • Constituent Services Affiliate Network Birth Mom Network Support Groups Consultation Referral • Public Awareness Media Outreach PSA Awareness Campaigns Youth Education • Professional Education Curricula Provider training www.nofas.org

7. 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

8. 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!!!

9. 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

10. 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” Substance Use in Pregnancy

11. 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 • Nearly 85% of teen pregnancies are unplanned National Clearinghouse for Alcohol and Drug Information

12. Social Differences • Physicians Enable • Frequent misdiagnosis • Less likely to be screened for alcohol problems • CASA reports that only 6% of physicians routinely talk to women about alcohol use • Over-prescribing, or inappropriate prescribing addictive substances

13. Is Alcoholism Really a Disease? • Alcoholism is defined as a primary, chronic disease with genetic, psychosocial, and environmental factors influencing its development and manifestations

14. Progression of Alcoholism

16. 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

17. Our Families Journey Through Addiction, Denial and Recovery

18. 1977Karli, Danny and ErinA Happy Little Hippy Family

19. Karli age 10 (diagnosed with cerebral palsy)

20. Our Family Process: • Years of frustration and misdiagnosis • Years of believing that Karli was not trying her best • Believing that Karli would “grow out of it” • Received Diagnosis of FAS for Karli (16 year of age)

21. Acceptance Phase • Survival: Do or Die! • Catapulted into Process of Recovery

22. Karli at 16 Receives Diagnosis of FASNew 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

23. Karli possessed a natural ability for spiritual simplicity! Maybe she was here to teach us??… The glass was now half full!!

24. “We are not human beings having a spiritual experience, rather spiritual beings having a human experience.” Pierre Teihard de Chardin

25. Individuals with FASD make Powerful Advocates!

26. 2 Things Necessary for Life: • water • women

27. 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

28. 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): 1051-1059.

29. 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

30. 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

31. 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 www.womenhealing.org

32. 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.

33. Recovery begins when we: Change thinking: From linear to circular

34. Characteristics of Chemically Dependent Families • Family rules are rigid or non-existent • Inconsistent, arbitrary, irrational • Stress related illness is common • 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 • The patterns will continue in new family system

35. Characteristics of Chemically Dependent Families • Blaming and defensiveness • Used as a means of coping and avoiding pain • Isolation despite the appearance of enmeshment • There may be no emotional connection between them • Feelings are not expressed openly or appropriately • Pain, anger sadness or hurt may be discounted • Role transfers • Children acting parents and parents acting as dependent children

36. Rescuing Someone From Addiction: • Relationships • Consider physically separating from partner/family • Teach detachment skills • Enabling • Remove client from enabling family members • Investigate “love verses enabling” • COA/ACOA issues • Educate on effects on family • Relapse clients: address these early on

37. Ways to Destroy the Culprit ( Codependency) • Perfectionism • 3 P’s (perfectionism, procrastination, paralysis) • Vocabulary • Change “I can’t” to “I choose not to” or “I won’t” • Decision making • Make everyday decisions • Choices • Every action is a chosen action

38. 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

39. Communication Skills:I can’t to I won’tSaying NO: Setting BoundariesAssertiveness

40. Client’s with a Child with FASD • Extreme shame • Grief • Stigma • Self-esteem • Acceptance

41. Referral for Assessments: • Diagnostic evaluation • Ongoing assessments • Medical • Mental health • Occupational and physical therapy • Speech and language • IQ and academic achievement

42. 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

43. Parenting Strategies • Strategies that have been modeled on other developmental disabilities • Often, children are already receiving services; make sure they are the correct services

44. 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

45. Ongoing Case Management • Future support for child • Respite care • Possible kinship care • Possible foster care placement

46. 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 ! Hello SOUL-SELF!

47. 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!

48. Children with FASD grow up; we treat them in our human service agencies

49. University of WashingtonFetal Alcohol and Drug Unit In a study that examined 415 persons with FASD between the ages 6-61, Dr. Ann Streissguth found:

50. 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%)