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Secondary Disabilities Early Intervention and Strategies for Persons with FASD

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Title: 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 OMalley

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
Typical Primary Characteristics
  • 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

8
Characteristics continued
  • 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

9
Positive characteristics
  • 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

10
Toddlers (1-5)
  • 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

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 IQs
    appear to be developing normally

12
Children (6-11)
  • 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 IQs
    are normal
  • desperate for stimulation and excitement

13
6-11 continued
  • 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

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
Adults (18 and over)
  • 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

20
Adults
  • 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

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

25
Heres 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
  • Alexs 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 didnt bond with parents,
    cant bond with child
  • They know they are supposed to care but the
    feeling isnt 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 dont get basic medical care, dont 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 dont understand that things dont
    happen in a vacuum

31
  • POOR PROBLEM SOLVING ANGER
  • Anger tends to be a common response to many
    problems
  • Because the parent doesnt connect action
    consequence, everything is someone elses fault
  • Anger management programs often dont work with
    persons with FASD

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

33
What can be done to assist persons with FASD?
34
Some strategies to consider
  • Think differently about the dysfunction
  • Stop fighting the behavior
  • Dont 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

35
Strategies continued
  • 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
  • Dont allow exploitation because of their naiveté
  • Recognize strengths and variability

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 childs 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 SUPPORThttp//www.acbr.com/fas/faslink.ht
    m
  • 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/f
    as/
  • FAS RESOURCES http//azstarnet.com/tjk/fasrefs.h
    tm

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_at_aol.com
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