Video: Parental Expectations with an Adult Child Impacted by FASD

This video covers the experience of transitioning to adulthood for a child affected by FASD.

About this video

Production date: October 21, 2008
Length: 83 minutes
Presenter: Mary Berube, MSW, RSW

Mary Berube is the adoptive mother of two young men with FASD, both diagnosed as young adults. This presentation aims to provide some insight into FASD beyond age 18 and how it affects the family and individual. As a practicing Social Worker, Mary has been involved with persons affected by FASD and the many related issues in direct service delivery, planning, policy and research.

Outcomes

This video will help you understand:

  • the experience of transitioning to adulthood for a child affected by FASD
  • strategies for resolving issues such as finances, wills and future planning
  • the implications for family relationships

Content

  1. Definitions (5:03)
  2. Requirement to meet FASD diagnosis (10:00)
  3. Primary disabilities (13:33)
  4. Secondary effects in adults (29:55)
  5. Life issues: finance and family planning (48:42)
  6. Setting boundaries (58:28)

Definitions

FASD is a spectrum disorder, meaning its effects fall on a continuum from loss of potential to debilitating health and cognitive issues. Loss of potential is hard to diagnose or recognize.

‘No amount of alcohol is safe.’

This preventive message may be unintentionally contributing to blaming those who abuse alcohol during pregnancy and vilifying the birth mother.

Important to remember

  • factors related to lifestyles cause high risk for substance abuse
  • factors include trauma, neglect and mental illness
  • remember the birth mother – not just the child with FASD
  • birth mother may have been using alcohol to self-medicate for chronic physical or psychological pain caused by mental illness, trauma, or both

Requirement to meet FASD diagnosis

  • confirmation of alcohol use in pregnancy
  • symptoms evident from the earliest point of detection in developmental cycle
  • cognitive problems do not always mean FASD
  • FASD affects the central nervous system
  • there is no safe period of alcohol exposure
  • facial dysmorphic features of FASD are developed only if alcohol intake occurs during a short window of the first trimester of pregnancy
  • majority of those with FASD do not have facial dysmorphic features

Primary disabilities

Primary disabilities are a direct result of damage caused by alcohol and consist of problems with:

  • meeting developmental milestones
  • processing information
  • adapting to changes
  • attending events on time
  • judgment
  • impulsivity
  • drinking and eating
    • capacity for knowing when to eat or when to stop eating
  • undeveloped concept of self:
    • developed particularly during teen years
  • compromised ability to think and reason abstractly
    • making sense of things you cannot see
    • such as understanding how things that happened in past can affect the current situation
  • failure to understand cues
  • language:
    • good at hearing and copying vs. understanding what was heard
    • ability to verbalize, but may not grasp what has been said
    • this can make individual look ‘non-compliant’ rather than ‘non-comprehending’
  • memory:
    • inconsistent abilities
    • if something was remembered last week, it may not be remembered this week

Secondary effects in adults

Secondary effects of FASD in adults are the behavioral consequences that occur when a person with the primary disabilities interacts with the environment and consists of problems with:

  • social compliance and the law
  • addictions and substance abuse
  • finding and maintaining housing
  • employability
  • relationships
  • physical health
  • mental health
    • most commonly anxiety and depression

Transitioning from childhood to adulthood

  • as part of growing up and becoming independent, teens move away from desire to please their parents and seek to find their own code of conduct
  • for people with FASD, it’s important to provide them with concrete guidance and hands on support
  • for example: “this is what you need to do” vs. “be good”
  • the focus of interventions should be meeting daily living needs

At ages 18 and 19

  • they look like others their age but will likely require a great deal of supervision
  • substance abuse can lead to more distinct concerns
  • this is due to different physiology (affects brain differently), and damage to prefrontal cortex (executive functioning)
  • substance use can lead to unpredictable or dangerous behaviour

Substance abuse treatment can be problematic due to:

  • inconsistent attendance
  • can present as manipulative, unmotivated, depressed, thought disordered or in denial
  • group therapy not recommended
  • persons with FASD are like sponges and cannot separate their emotions from those of others
  • young persons with FASD often experience feelings of:
    • worthlessness
    • depression
    • suicidal thoughts
    • panic
    • anxiety
  • substance use can increase these feelings

Life issues: finance and family planning

1 – Finance

  • one of the most challenging topics
  • managing their finances and restricting spending raises ethical and moral questions
  • consider having someone else manage their money for them

2 – Family planning

  • involve an understanding and supportive physician in all health matters, including sexual health and birth control
  • persons with FASD usually do not have the capacity to care for the children they produce
  • often the grandparents become the caregivers

Setting boundaries

Advice for caregivers

  • you need to set boundaries for your own involvement while understanding the limitations of the person affected by FASD
  • identify ahead of time when you will not be involved, and when and how you will be involved
  • make a plan for managing crises without ‘rescuing’
  • identify priority issues such as who will manage them and for how long
  • discuss with siblings the effects of having a family member with FASD
  • planning for the individual’s continued care after the death of parents or caregivers is important
  • if there is an inheritance, a public trustee can be appointed to manage funds
  • at age 18, young adults have a right to confidentiality with health care providers and other officials
  • it is important to work in partnership with these providers and mutually share information critical to their care
Created:
Modified: 2015-10-07
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