September is Fetal Alcohol Spectrum Disorders (FASD) awareness month and every year on September 9th, International FASD Awareness Day is observed. It is an opportune time to give an overview of how Illuminate Colorado is working to strengthen families impacted by FASD and shine a light on ways our organization is working to prevent children from experiencing the effects of prenatal alcohol exposure.

The early years of life can have a critical impact on learning and development. That’s because during the first few years, children’s brains are developing fast. In fact, more than one million new brain connections form every second! Exposure to alcohol before birth can affect executive brain function for a lifetime.

What is FASD?

FASD is an umbrella term describing the range of effects that can occur as a result of prenatal alcohol exposure. Often under and misdiagnosed, FASD can present individuals and families with challenges well into adulthood. On average, 1 in 20 first graders in the United States have a Fetal Alcohol Spectrum Disorder, which is about one student per classroom. (1)

 

 

The effects can include:

      • difficulty with sequencing,
      • difficulty processing information,
      • difficulty storing and/or retrieving information,
      • difficulty with abstract concepts of time and money,
      • difficulty in maintaining a stable emotional state, swings from emotional highs to lows,
      • an inability to apply consequences from past actions, and
      • an inability to regain composure without assistance.

In reading this list of effects it is easy to imagine the high level of stress parents or caregivers of children with FASD experience. You can also envision how, if misdiagnosed or unidentified, a child with FASD may struggle well into adulthood with employment and potentially parenthood themselves. It is important that we increase access to resources for families impacted by FASD.

Illuminating FASD

With a long history of focusing on substance exposure during pregnancy through the Substance Exposed Newborns (SEN) Steering Committee and serving as the Colorado Chapter of the National Alliance for Drug Endangered Children, Illuminate Colorado was approached by the Colorado Chapter of the National Organization on Fetal Alcohol Syndrome (NOFAS) in 2014 about broadening our substance exposure work to include FASDs. This led to Illuminate becoming the Colorado affiliate of NOFAS and the development of a thoughtful and strategic approach to FASD and strengthening families along the Spectrum of Prevention.

It’s All About Strengthening Families

There are a lot of misconceptions of what the term FASD means.  Effective prevention requires an empathetic approach when interacting with families that deal with FASD. Over the years, alcohol use during pregnancy has become something that is often viewed as culturally acceptable and mixed messages surrounding alcohol use during pregnancy are rampant. But the truth is, according to the Centers for Disease Control and Prevention, there is no known safe amount of alcohol use during pregnancy. Alcohol has the potential to cause permanent damage to the brain and other organs for the developing fetus throughout an entire pregnancy.

Illuminate is focused on educating parents and caregivers on alcohol use and addressing the stigma that surrounds the topic of FASD. There’s too much shame and stigma coming forward as a biological parent of a child with an FASD. But it’s not about blame. It’s about recognizing current needs and reinforcing support systems that we need to provide for families. Above all, we want to support families where they are, allowing all children to have the brightest childhood possible.

Families impacted by FASD need each other.

As the Colorado state chapter lead of Circle of Parents, Illuminate Colorado also offers multiple parent and caregiver support groups, providing a friendly, supportive environment led by other parents and caregivers. It’s a place where anyone in a parenting role can openly discuss the successes and challenges of raising children.

In these groups, parents can join other parents and caregivers of children with Prenatal Alcohol Exposure and Fetal Alcohol Spectrum Disorders all around Colorado to share support, tips and advice, or just talk. This is a safe space to vent, cry, laugh, joke and find out how other parents are navigating this new world.

In addition to the Circle of Parents group, Illuminate also supports the NOFAS Colorado Facebook group as another place for parents and caregivers to connect with each other, get resource recommendations and share their experiences.  We are listening to the needs of families to create change for all families impacted by FASD.

 

Strengthening Colorado

Our organization also leads the FASD Identification Work Group, comprised of family members and professionals meeting monthly to improve access and quality of resources for families impacted by FASD across the state.

Throughout this year the work group held a series of FASD roadshow events to raise awareness of FASDs and solicit feedback on priority areas for change in Colorado. Special thanks to the Arc of Pueblo and the Arc of Weld County for collaborating with us to bring these events to their communities. The last town hall event was held on September 2nd. Look for a release of recommendations for strengthening families to prevent FASD from parents and caregivers impacted by FASD later this month.

These recommendations from parents and caregivers impacted by FASD, as well as professionals dedicating their careers to children and families, will hopefully light the way for our work for years to come. Because even though FASDs are present in a child’s life forever, there ARE approaches that can help support individuals and families to thrive into adulthood.

Contact us if you would like to learn more about FASD or you’d like to get involved.

 

Sources

(1) May, P. A., et al. Prevalence of Fetal Alcohol Spectrum Disorders in 4 US communities. JAMA. Online February 6, 2018.

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