Secondary Disabilities Early Intervention and Strategies for Persons with FASD

1. Secondary Disabilities Early Intervention and Strategies for Persons with FASD October 4, 2002 The Iowa Respite and Crisis Care Coalition

2. Secondary Disabilities “In FAS/E, the primary birth defect involves CNS damage that occurs in utero. When this prenatal damage is undetected and behavioral problems arising from it are not understood, the growing child is at risk of developing additional ‘secondary disabilities’ that can be tremendously debilitiating. Streissguth and O’Malley

3. Implications of Secondary Disabilities • Mental Health Problems, the most prevalent secondary disability, experienced by 94% • psychiatric hospitalization was required for 8% of those age 6-11, 20% age 12-20 and 28% of adults • Except for attentional problems, all types of mental disorder problems increased in adolescence and adulthood

4. Disrupted School Experience, (suspension, expulsion or drop out) experienced by 43% school-aged clients • Alcohol/Drug Problems were experienced by 30% aged 12 and over

5. Implications continued: • Confinement (inpatient treatment for mental health, drug/alcohol problems, incarceration for crime) experienced by 60% clients age 12 and over • Inappropriate Sexual Behavior reported in 45% of the clients age 12 and over

6. More Implications: • Dependent Living was the situation for about 80% of adult clients • Problems with Employment were indicated in 80% of adult clients • Trouble with the law experienced by 42% of clients, about 60% clients age 12 and over

7. memory problems difficulty storing and retrieving information inconsistent performance (“on” and “off”) days impulsivity, distractibility, disorganization ability to repeat instructions, but inability to put them into action difficulty with abstractions, such as math, money management, time concepts Typical Primary Characteristics

8. cognitive processing deficits (may think more slowly) slow auditory pace ( may only understand every third word of normally paced conversation) developmental lags (may act younger than chronological age) inability to predict outcomes, or understand consequences high pain threshold Characteristics continued

9. Happy & friendly Great sense of human persistence Highly Verbal Great Story Teller Great sense of humor Highly verbal Trusting, loyal Curious Affectionate, caring Creative, artistic Have Lots of Energy Musical Concerned about younger children Hard Workers Spontaneous Positive characteristics

10. Sometimes medically fragile usually “high” maintenance” often exhausted and irritable from uneven sleep patterns Highly manipulative a danger to self and others deficient in the normal sequential learning abilities in reasoning, judgement and memory Toddlers (1-5)

11. Toddlers cont... • Very difficult to manage out in public • lacking in normal abilities to distinguish between friend and enemy • misunderstood by service providers if their IQ’s appear to be developing normally

12. Impulsive, unpredictable and mischievous, creating on-going safety hazards uneven sleep patterns innately skilled in manipulative tactics Void of a normal sense of justice overlooked as permanently disabled if their IQ’s are normal desperate for stimulation and excitement Children (6-11)

13. Emotionally volatile and exhibit wide mood swings through out the day often disconnected from their own feelings Unable to identify or express logical reasons behind their volatile outbursts isolated and lonely, often excluded in social settings 6-11 continued

14. Lack the reasoning skill to figure out why they are excluded • angry and resentful toward structure and supervision than their peers need • void of natural empathy for others

15. Adolescents (12-17) • Moral chameleons despite consistent loving care, family values and general rules of social behavior not internalized • at high risk for being drawn into anti-social behavior- stealing, running away, lying

16. 12-17 • Safety menace to themselves and others • in need of limits and protection like a three year old • often obsessed by primal impulses such as sexual activity and fire setting

17. 12-17 • Able to recognize and will submit to raw power -vulnerable to gangs • seriously impaired when it comes to making decisions • terrified of major transition - middle school, moving

18. Adolescents • Extremely vulnerable to ideas in movies, video, music, TV and advertisements • unaware of normal hygiene needs • unable to take responsibility for their actions

19. Great risk for entering the criminal justice system unlikely to follow safety rules-fire hazards, food preparation,vehicle operation Notably lacking in ability to manage money volatile if pushed too far to do something they see as unreasonable Adults (18 and over)

20. Quite vulnerable to co-dependent relationships which all too often turn violent incapable to taking daily medication on a regular basis Vulnerable to panic attacks, depression, suicide, mental and emotional overload and sometimes psychotic breaks Adults

21. Adults • Very impaired as to entertaining themselves and keeping out of mischief when left alone • not nearly as capable as they appear to be • in desperate need of appropriate sheltered employment opportunities

22. Alex • Alex was diagnosed ADHD at age 5 • became self abusing in rages at age 6 • assessed learning disabled by 7 • and is now confirmed FASD age 8 • bio-mom admitted to drinking -“about 12 beers a month” • Alex’s behaviors are sooooo classic FASD

23. Alex continued…. • He chatters and makes noise constantly unless he is in one of his “down” moods -very dark and no one comes in • he has no concept of rules and consequences, safety is of no importance • Alex will go into self abusing rages for no apparent reason-bashing his head with fists or against walls, scratching his legs to bleeding, kicking and hitting anything in his way

24. Here’s more... • He has few friends - he can get along for a spell but then something happens-it is NEVER Alex’s fault! • Alex is always making noise - any kind of noise, cannot stop interrupting

25. Here’s more... • all needs must be met immediately and “no” just sets him off • he is an expert at wheedling, negotiating and blaming just to get his way

26. And…. • Alex is very picky about food - chicken is OK one day but not the next. He asks for food, then denies even requesting it

27. And finally… • Alex’s emotional maturity is at about 3-4 years old • Yet, despite his troubles, Alex is a funny and intelligent speaking little boy who loves his brother like no other...

28. Parents Who Have FASD • LACK OF BONDING • Organic brain damage can result in an inability to bond • Affected individual didn’t bond with parents, can’t bond with child • They know they are supposed to care but the feeling isn’t there

29. Parents continued: • POOR MEMORY • Intend to make appointments, finish paperwork, etc. but fail to do so due to memory problems • Appear to neglect their children by taking them outside to play, going to the house to answer the phone &staying inside because they have forgotten that the children are outside • Forget to feed, clothe & bathe the children • Children don’t get basic medical care, don’t get to school

30. Parents… • COMPARTMENT THINKING • Parenting requires being able to do many things at once, FASD tends to make this difficult • Typical people see life as a string of beads – if you move one bead, the other beads move. People with FASD don’t understand that things don’t happen in a vacuum

31. POOR PROBLEM SOLVING & ANGER • Anger tends to be a common response to many problems • Because the parent doesn’t connect action & consequence, everything is someone else’s fault • Anger management programs often don’t work with persons with FASD

32. Frustration is increased because many parents understand they are not doing what needs to be done but can’t seem to improve the situation • Parents with FASD can easily become abusive

33. What can be done to assist persons with FASD?

34. Think differently about the dysfunction Stop fighting the behavior Don’t engage in power struggles, arguments Do not use physical force Recognize the developmental age, not chronological Model what to do, rather than tell what to do Keep it simple –small, small, small steps taught one at a time Some strategies to consider:

35. Use very few, non-negotiable rules Slow down learning pace Concrete, step by step instructions, repetition of requests every day Consider adaptations in home, school, community Don’t allow exploitation because of their naiveté Recognize strengths and variability Strategies continued:

36. Try adaptations before considering medications Give time for response, look for understanding (not necessarily words) Concrete rather than abstract concepts Lessons taught in context

37. What can be done to assist parents? • Help clients follow-up on referrals and make linkages with community service providers • Assist with paperwork, schedules, appointments • Obtain a developmental disability status if appropriate

38. Find stable, safe housing in supervised setting • Teach and role-model basic issues such as bill paying, food shopping, hygiene and cooking

39. Find a solid network of community service providers who will work with parents • Educate providers about the needs of family and FASD

40. Help locate long-term mentors for clients, respite • May have to make a decision about ability to ever adequately care for children

41. Strategies “Keys to working successfully with FASD children are structure, consistency, variety, simplicity and persistence. It is important to be brief in explanations and directions, use a variety of ways to get and keep their attention” Dr Patricia Tanner-Halverson Strategies for Educating Children with FAS/FAE

42. HOW LONG??? • FASD is forever. The brain damage is permanent. Intervention and support services need to be in place for the rest of the child’s life.

43. Actual lifetime costs for one particular child is almost $5 million dollars • $1,489,000 medical costs; $530,000 psychiatric care; $354,000 foster care; $12,000 orthodontia; $6,000 respite care; $240,000 special education, $640,000 supported employment; $360,000 SSI; $1,376,999 residential placement • “Economics of FAS” by Chris Kellerman

44. Resources on the Web • FASLINK SUPPORT:http://www.acbr.com/fas/faslink.htm • FASWORLD: http://www.come-over.to/FASWORLD • FAS INFO: http://www.come-over.to/FAS/ • FAS RESEARCH: http://depts.washington.edu/fadu/ • FAS EDUCATION: http://www.bced.gov.bc.ca/special/fas/ • FAS RESOURCES: http://azstarnet.com/~tjk/fasrefs.htm

45. “Let us put our heads together and see what life we will make for our children” Sitting Bull, Lakota leader

46. Jovanka R. Westbrook MS, CADC Director of Family and Early Intervention Services Prevention Concepts, Inc. 1291 Geneva Street Indianola, Iowa 50125 (515) 961-8830 jovankaprev@aol.com