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Addressing Families of Children with an FASD

Key elements of a dialogue with parents/guardians for medical home providers

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he following table demonstrates key messages when communicating with families (download the PDF). Sample scripts are also available to help.

 

Key Element/Message  Additional Details
Affirmation of a positive attribute or strength of the child  Developmental, physical, affect, appearance, well-loved, skills or interests, etc
Affirmation of a positive attribute of the parent or caregiver Concern for child, nurturing, structure and discipline, advocacy, etc, and how that benefits the child despite difficulties posed by the acknowledged challenges
Restate the presenting concerns or questions to demonstrate understanding The family may want to know about the specific FASD diagnosis but want more help on the child’s sleep issues.
Explanation of findings to support the diagnosis    ​—
Discussion regarding the value of a diagnosis 
  • Not to blame but to better understand and help; availability of resources and interventions
  • The diagnosis does not change who the child is, but should explain why the child develops, learns, and behaves the way she/he does.
  • Most effective interventions for FASDs require understanding of the brain injury and will include changes in expectations and broad community support. Medication does not target the primary symptoms of most individuals with FASDs, although certain coexisting conditions may respond to pharmacotherapy (eg, anxiety and attention-deficit/hyperactivity disorder [ADHD]). In addition, traditional behavioral interventions may help to address the neurobehavioral issues related to FASDs. Parenting, educational, and counseling strategies have to be adjusted to support the needs of the child with an FASD.
  • Discussion regarding resources that become accessible with a diagnosis (developmental intervention, educational services, behavioral support, parenting strategies, and medical referrals as needed).
Discussion of resources provider can share/identify for action and support at the time of the visit  Referrals to an FASD clinic, referral to a clinic social worker for advocacy/parent support, referral to the school for educational/language evaluation or to developmental services, provision of educational materials for parent and, as needed, referral of family members struggling with alcohol use disorders, monitoring of neurodevelopmental status, and managing the child’s  special needs within the context of the medical home
Recognize that the impact of an FASD diagnosis will differ for a biological parent or close relative versus an unrelated foster or adoptive parent, and it is important to acknowledge the feelings associated with knowledge of the diagnosis.  Focus needs to be shifted from blaming the biological mother for drinking to understanding alcohol misuse, abuse, and alcoholism as a disease. In addition, attention needs to focus on determining the best course of treatment for a child who may have an FASD.

For a birth parent that is caring for the child, it is important to reaffirm that the parent has the best interest of the child at  heart and is an important part of the care team.   

It is important for the medical home provider to be able to discuss alcohol issues with a mother in a nonjudgmental manner. She may need reassurance as a parent and benefit from emotional support as well as professional and/or community referrals. She will also benefit from specific discussions regarding her child’s diagnostic and treatment needs.
Emotional/physical trauma (eg, abuse) complicates the diagnoses and problem list and may require additional interventions.     Any mother who has concerns about her child should feel comfortable talking with her medical home provider, whether those concerns stem from prenatal alcohol exposure, environmental trauma, or other sources. It is important for the medical home provider to cultivate skills to be able to talk about these important issues.
It is important to recognize the role of the parent, whether biological, foster or adoptive, as an integral part of the care team.  Children with FASDs often need an advocate or a champion, someone who can help explain the child’s needs to her/his world and someone who can help explain the world to the child. The parents/caregivers may be this advocate but the parents’/caregivers may also be empowered to seek out an advocate for the child in his/her school, in the mental health system and in the community systems of support.

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