• Each child presented differently because FASD is truly a spectrum disorder.

• Most of the children of the presenters had initial diagnoses of anxiety, ADHD, and/or bipolar disorder before receiving an FASD diagnosis.

• Obtaining a diagnosis for a child is difficult in part because few medical professionals in North Carolina have experience with FASD.

• Accessing services and supports for a child diagnosed with an FASD is extremely challenging; the one child with FAS (Fetal Alcohol Syndrome – facial features are visible) was diagnosed the earliest and had the most appropriate services from an early age.

• The children without facial features and higher IQs were not diagnosed until much later in life, the latest being 26 years old.

• Everyday can be different - one day a child may be able to do something that he cannot accomplish the next.

• Individuals with an FASD require lifelong assistance (literally lifelong).

• FASD is overwhelmingly difficult to live with - for the individual and his/her family

• It takes a village.

• Stop the stigma - we all have enough to handle, that just weighs us all down.

  

• After diagnosis, in hindsight, red flags were recognized, including dysmaturity, social and communication deficits, sensory dysfunction, and low executive and adaptive functions.​

• The children had many strengths, including being loving and outgoing, and loving outdoors, animals and art.

• Invaluable support group experiences were cited by all.​

The panelists and presenters were asked to give brief takeaway messages. They included:

• One size does not fit all

• Don’t judge a book by its cover

• Medication can help with some behaviors

• Change environment not the brain

• Be vocal, don’t be quiet!

Kathy Hotelling thanked the parents for coming forward to tell their stories to help raise awareness about the daily challenges they face raising children who were prenatally exposed to alcohol. She stressed the importance of structure, consistency and supervision for all individuals with diagnosed and suspected prenatal alcohol exposure.

Hotelling summarized, “The testimony of the parents was compelling evidence we need to ensure adequate diagnostic capacity exists and that all healthcare workers can recognize the red flags of alcohol exposure in utero.”

“FASD needs to be included in the System of Care (SOC) in North Carolina so our families, who are dealing with the effects of prenatal alcohol exposure every day, can enable better outcomes for their children.”  
 

What Is an FASD informed Community?

Elizabeth Field, M.S., co-founder of NCFASD Informed and parent of a teen with an FASD, also gave an overview of the characteristics of an FASD informed community, and the barriers to achieving informed communities, from her parent perspective.

Characteristics of an FASD informed community

Early Diagnosis and Intervention Services

Proactive

Collaborative

Strengths-based Perspective

Strong Circle of Support

Neurobehavioral Approach
 

Pervasive lack of knowledge about FASD*

Low diagnostic capacity

Lack of information for families about services available to those with a developmental disability

Lack of evidence-based interventions

Public stigma toward diagnosis

Funding in NC only exists for prevention

We are excited to announce NCFASD Informed has received 501c3 nonprofit status. Receiving federal tax-exempt status will help us join with other 501c3 nonprofits who are supporting children with I/DD (Intellectual and/or Developmental Disabilities) and their families. Fetal Alcohol Spectrum Disorder (FASD) is a neurodevelopmental disability.

• Western Carolina: Fullerton Genetics Center / Fetal Alcohol Spectrum Disorders Clinic / Chad Haldeman-Englert, MD & William Allen, MD; Michael Pesant, LCSW, Clinic Coordinator   Click for PDF of Brochure

• Central Carolina: Developmental & Behavioral Pediatrics of the Carolinas / Fetal Alcohol Spectrum Disorders Clinic of the Carolinas / Yasmin Sentruias, MD    Click for PDF of Brochure

• Eastern Carolina: Division of Medical Genetics, Department of Pediatrics, Brody School of Medicine, Eastern Carolina University, Margie Jaworski, MD & Evelyn Rawcliffe-Kimbrell, DO 

Send comments and article suggestions to the informed editor, Elizabeth Field, M.S.: Elizabeth.field@ncfasdinformed.org

This newsletter is provided to families and professionals as information on Fetal Alcohol Spectrum Disorder (FASD). It is not intended to replace professional medical, psychological, behavioral, legal, nutritional, or educational counsel. Reference to any specific agency does not necessarily constitute or imply its endorsement, recommendation, or favoring by NCFASD Informed.