NCFASD Informed Newsletter - October, 2018

NCFASD Informed Newsletter - October, 2018

October 2018 eNewsletter

Presentation Highlight for
FASD Awareness Month  




The Family Voice: Parent Panel Brings
Messages of Challenge and Hope to
NC State Collaborative
NCFASD Informed hosted a parent panel in September at the North Carolina Collaborative for Child, Youth and Families. 

“It was a powerful presentation. The panelist's testimonies made the family perspective clear and moving," shared Joanne Scatturo, North Carolina Collaborative for Children, Youth and Families Co-Chair.  

Three parents from the Triangle FASD Support Group answered questions posed by moderator, Kathy Hotelling, Ph.D., NCFASD Informed Board Chair, and parent of an adult with an FASD. The parents shared their very personal perspectives of raising children with complex needs. Although there were differences in responses, there were striking similarities, including:
  • 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
 

Barriers to Creating FASD informed Communities in North Carolina

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


*Two Key MYTHS: Most health and mental health professionals are still looking for "the face” and very low cognitive functioning. FACTS: Most people do not have facial features associated with FAS, and IQs range from low to high.



NCFASD Informed, Inc. Is Now a 501(c)(3) Nonprofit

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.

Our new status should help with applying for state and federal grants to expand our reach to all of North Carolina. Please contact us if you identify any grants that may be of interest to us, or organizations with whom we should partner.

Thank you to all who have volunteered their time and talents to help us reach an important next milestone for NCFASD Informed. On to the next!
Resources to Share
Check out Parent Resources on our web site: Go to www.NCFASDinformed.org and click on Resources tab.
NEW! An American Academy of Pediatrics (AAP) report published in the October issue of Pediatrics addresses pediatrician management of FASD. 
 
The AAP FASD Toolkit was developed to “raise awareness, promote surveillance and screening, and ensure that all affected children receive appropriate and timely interventions". Please pass along to healthcare and mental health providers. 

Diagnosis in North Carolina
  • 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 


informed is an e-newsletter from NCFASD Informed, Inc. The mission of NCFASD Informed is to create FASD informed communities in North Carolina to empower individuals impacted by prenatal alcohol exposure. The vision is to a world where individuals with FASD can thrive. Founded in January 2018, NCFASD Informed, Inc. is a 501(c)(3) nonprofit organization focused on FASD Education, Diagnosis, Intervention, and Family Support. Its mission does not include Prevention programs. 

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.

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