Strengthening Colorado Families Impacted by Fetal Alcohol Spectrum Disorder (FASD) through Policy

Strengthening Colorado Families Impacted by Fetal Alcohol Spectrum Disorder (FASD) through Policy

In the US, 1 in 20 school-aged children are estimated to have Fetal Alcohol Spectrum Disorders (FASDs).¹ FASDs are caused by prenatal alcohol exposure and can result in a wide range of mild to severe symptoms, including intellectual and learning disabilities, difficulty paying attention, vision or hearing impairment, language and speech delays, and more.²

Although FASDs impact thousands of Colorado families, many have limited access to information, diagnostic resources, and healthcare providers who are knowledgeable about these conditions. Policy change is needed at a state and federal level to ensure children and families have the resources and support needed to thrive.

Early Identification Strengthens Families

Knowledge of parenting and child development is one of five research-informed protective factors to strengthen families and prevent child maltreatment.³ FASDs are often misdiagnosed or underdiagnosed, inhibiting a child’s support system, including their parents, healthcare providers, and school, to help a child reach their full potential. When families and support systems have access to early intervention and information about how FASDs may impact a child’s development, they can better respond to a child’s needs and prevent child maltreatment. Policy change is needed to ensure all families impacted by FASDs have access to these vital services for children and families. 

How Can Policy Change Support Families Impacted by FASDs?

With such limited awareness among communities, service providers, schools, and other systems that frequently interact with children with FASDs,  there is tremendous opportunity for comprehensive legislation to address gaps in awareness and resources for families and children. Policy change is needed to:

    • Expand funding for FASD prevention
    • Enhance research efforts to increase understanding of FASD
    • Expand funding to increase access to early intervention and treatment
    • Train a widespread range of youth-serving professionals, including child welfare, medical, behavioral health, school, early childhood, and juvenile justice system professionals

In 2022, FASD United and its state chapters, including Illuminate Colorado, advocated for the FASD Respect Act, which would have expanded the federal response to FASD as a public health issue, including by establishing grant programs to meet the needs of people with FASDs. Unfortunately, this bill did not pass. FASD United is working to introduce the FASD Respect Act 2.0 during the 2023-24 federal legislative session. Illuminate Colorado and our network of Colorado FASD advocates will stay engaged to advocate for the success of this groundbreaking legislation.

Hear from Colorado FASD Awareness Advocates

Marilyn Fausset, M.Ed, Co-Chair FASD Awareness Work Group:

“What made it so hard for our family was that not a single medical or behavioral health professional was knowledgeable about fetal alcohol spectrum disorders (FASD); none realized that prenatal alcohol exposure was at the root of the problems for my child. Finally, I educated myself and sought out a provider able and willing to diagnose for FASDs. We finally got a fetal alcohol syndrome (FAS) diagnosis at age 23. This diagnosis led to the developmental disability (DD) services my adult child now receives. It is sad that we received so many incorrect diagnoses, which led to inappropriate interventions and delayed DD supports.”

Domenica Steele, MA, LPC-C, Co-Chair FASD Awareness Work Group

“I have nine children, five of whom have an FASD. My triplets were identified young and received early intervention services including speech, occupational therapy, physical therapy, and developmental intervention. I am convinced those services have changed the trajectory of their lives for the better! In addition to being an adoptive mother to children with an FASD, I am also a professional supporting families affected by FASD. 

Caregiver distress rates are very high among caregivers supporting individuals with an FASD and part of the reason is struggling to obtain services for their family, managing difficult behaviors, and having limited resources available to them. Early intervention is critical not only for the affected child but for the whole family system. Accessibility to early intervention supports the whole family and helps families build a strong team of professionals for support and guidance.” 

To learn more about the Colorado FASD Awareness Work Group, please contact Kelli Sutton, Strategic Initiatives Manager, at ksutton@illuminatecolorado.org.

Kelli Sutton

Strategic Initiatives Manager

ksutton@illuminatecolorado.org

List of CO providers equipped to diagnose under the FASD umbrella.

Get a diagnosis of a Fetal Alcohol Spectrum Disorder (FASD) for yourself, your child or loved one here.

Citations
  1. Centers for Disease Control and Prevention. (n.d.). Data & Statistics on FASDs. Retrieved From: https://www.cdc.gov/ncbddd/fasd/data.html
  2. Centers for Disease Control and Prevention. (n.d.). Basics about FASDs. Retrieved From: https://www.cdc.gov/ncbddd/fasd/facts.html
  3. Center for the Study of Social Policy. (n.d.) About Strengthening Families and the protective factors framework. Retrieved From: https://cssp.org/our-work/projects/protective-factors-framework/
  4. Seibert, J. H., Council, C. L., Besser, A. J., Hinde, J. M., & Karon, S. L. (2019). Fetal alcohol spectrum disorders: Policy challenges and opportunities. U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation (ASPE). Retrieved From: https://www.rti.org/publication/fetal-alcohol-spectrum-disorders

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When Is Much…Too Much?

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When Is Much…Too Much?

When Is Much…Too Much?

Thousands of Colorado families are impacted by Fetal Alcohol Spectrum Disorders (FASD), a term used to describe a range of effects that can occur in a fetus exposed to alcohol before birth. To learn more, visit our topic page on Alcohol & Pregnancy.

As I watched the skit on Saturday Night Live play out entitled, Winter Formal, I came to the realization that those who created the skit, as well as those who participated in it, had no idea about FASD and its impact. Of course, this is my opinion, but I would guess that if any of the individuals that were connected to this skit truly knew about FASD they would have at least ixnayed the following line:  “And I drank while I was pregnant!”  

Sarah Sherman, who portrays Donna Lacatza, says this line after she and Pete Davidson, portraying Ron Lacatza, describe why it is best for young ladies to purchase formal wear from their business for the upcoming winter formal dance.  The skit pokes fun at the Lacatza’s son, Donovan, who is mercilessly made fun of and humiliated throughout. His ‘parents’ have him displayed after drawing back some curtains. The gist of the skit is that they offer him as part of the deal when it comes to a formal wear purchase. The parents say the safety of any daughter’s sexuality will be well intact because who in their right mind would ever want to have sex with their son? They continue to cruelly bash him all throughout the skit. 

I recognize that comedy like SNL walks a fine line between appropriate and inappropriate. I understand that it pushes moral boundaries, occasionally going too far. In other words, nothing is off limits. That is the whole point, and the controversy behind what makes comedy what it is. Making fun of everyone and everything. So when is much, too much? That’s the million dollar question, isn’t it?  

“So when is much, too much? That’s the million dollar question, isn’t it?” 

Of course, because I have a son with FASD and I’m also an elementary school teacher, my sensitivity was turned up several notches. Putting their son on display to humiliate him was a form of abuse as far as I’m concerned. I’m a big fan of humor, and will admit I’ve laughed at comedy sketches that would be considered offensive to various groups of people. I’d be a hypocrite to say otherwise.  

So what is the answer here? I honestly don’t know. It would be too easy to say “don’t watch it.” But that’s a copout as far as I’m concerned. There is a much bigger issue here as it relates to human decency. This is an attack on a young person who doesn’t fit society’s definition of what is considered ‘normal’. I ask this question: what is normal and who is the authority that defines it? That’s where the issue lies.  

“What is normal and who is the authority that defines it? That’s where the issue lies.”  

We live in a dark world, so I get why people want to laugh. We need to laugh! What needs to be considered is when content becomes too much, what are we willing to do about it?  Should I never watch SNL again? That’s probably not going to happen. I tried to reach out to Pete Davidson to let him know of my concern with his part in the skit, and going one step further by asking if he’d be willing to issue a formal apology to the FASD community and pay tribute to those with FASD. I unfortunately wasn’t able to reach him. Surprise, surprise!  

Real change is going to happen with education. Since our son was diagnosed with FASD, I’ve intensely educated myself and have become a huge advocate for those impacted by FASD. Although this particular skit was a loss for humanity, there is a much bigger war out there that is being fought to proactively educate and eventually eradicate FASD from the face of this Earth.

“There is a much bigger war out there that is being fought to proactively educate and eventually eradicate FASD from the face of this Earth.”

About the Author

Anonymous

This article was written by a father of four beautiful children, three of whom have been adopted. He is committed to sharing the experiences of his family impacted by FASD, anonymously, through the Becoming FASD Aware blog series to strengthen families and build awareness.

Visit Illuminate's FASD Topic Page!

Click Here to Learn More About FASD.

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Reflecting Back and Looking Ahead– Being FASD Aware is a Year-Round Endeavor

Reflecting Back and Looking Ahead– Being FASD Aware is a Year-Round Endeavor

At the beginning of September, we called on you to Show Your Respect This FASD Awareness Month. As the month comes to a close, we wanted to take a moment to reflect on all of the efforts that were made to spread awareness this month and look ahead to all that is still needed to work toward prevention of Fetal Alcohol Spectrum Disorders (FASDs) and appropriate support for individuals and families in Colorado who are impacted.

 

A Month in Review: FASD Awareness Month 2022

Illuminate kicked the month off by focusing on FASD during our quarterly Luminary Lift Up session. Sharon Langendoerfer, a member of the SuPPoRT Colorado FASD Awareness Work Group and a retired neonatologist and pediatrician, helped attendees to become FASD aware with a presentation on the basics of FASD. The Work Group’s Chair and fierce FASD advocate, Marilyn Fausset, shared highlights about what the work group has accomplished – including the development of a list of Colorado Providers Equipped to Diagnose Under the FASD Umbrella– and what they are working toward moving forward. 

Susan Shepard Carlson, founder of Proof Alliance and FASD United board member, shared an overview of critical pending federal legislation known as ‘The FASD Respect Act’, which would reauthorize funding for prevention, screening, identification, research, and FASD-informed services, and Illuminate staff member, Cassie Davis, shared what the legislation would mean for Colorado and how to get involved in advocating for it.

Illuminate was thrilled to be able to put a major opportunity to advocate for the FASD Respect Act into action during the FASD United Affiliate Summit in Washington D.C. by meeting with the offices of Colorado representatives Diana DeGette and Joe Neguse and Colorado Senator John Hickenlooper to educate them about FASD and share information about and request their support of the pending legislation. 

Throughout the month, Illuminate was also proud to sponsor and participate in Run FASD, a virtual 5k to raise awareness and funds for FASD.

And it’s not just our organization who knows how important it is to be FASD aware, work to prevent FASDs from occurring, and support those who are impacted by it. Governor Jared Polis signed a proclamation in recognition of FASD Awareness Day, which reaffirms that “the health and well-being of the people of Colorado are enhanced by efforts to educate about, prevent, and support those impacted by FASDs”. 

The Work Does Not End Here

While the official FASD Awareness Month is a wonderful time to place a particular emphasis on FASD, creating awareness and advocating for the prevention of and appropriate support for those impacted by FASD is a year-round endeavor. 

Here are just a few of the ways that we need you to continue to spread awareness and advocate beyond September: 

We are so grateful to all of our partners across Colorado and nationwide who tirelessly advocate for visibility and support for the FASD community, and we look forward to continuing to do so together!

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Show Your Respect This FASD Awareness Month

Show Your Respect This FASD Awareness Month

Each September, we recognize Fetal Alcohol Spectrum Disorder (FASD) Awareness Month to bring awareness to the many individuals and families who are impacted by the effects of prenatal exposure to alcohol in Colorado and across the United States.

What is Fetal Alcohol Spectrum Disorder (FASD)? 

FASD, an umbrella term used to describe a range of effects that can occur in a fetus exposed to alcohol before birth, is the most commonly known cause of developmental disabilities in the United States.

While the exact number of people who have FASDs is unknown, it is estimated that up to 1 in 20 U.S. school children may have an FASD, with 1 in 7 pregnancies being alcohol-exposed. In Colorado in particular, an estimated 15.4% of pregnant individuals in our state drank alcohol during the last 3 months of their pregnancy, according to the most recently available Pregnancy Risk Assessment Monitoring System (PRAMS) data.

Learn More About Alcohol and Pregnancy

Have questions about the relationship between alcohol, pregnancy and FASD? Learn more on our Alcohol & Pregnancy topic page.

When children, adults, and families impacted by FASD receive appropriate diagnoses, supports, and services, secondary impacts of FASDsuch as dropping out of school, getting into trouble with the law, and substance usecan be prevented, and impacted individuals and families can thrive.

While we know the importance of providing appropriate services for pregnant people impacted by alcohol use and families who are impacted by FASD, significant and concerning gaps in FASD-related preventive, diagnostic and clinical resources are common in Colorado and throughout the United States. 

The Time is Now!

This September, we have a particularly momentous opportunity to build on and improve our nation and the state of Colorado’s efforts to prevent alcohol use during pregnancy, support those who are struggling with alcohol use during the perinatal period, and provide concrete supports to individuals and families impacted by FASD. 

The “FASD Respect Act” (S. 2238 and H.R. 4151), legislation currently being considered at the federal level, would reauthorize vital funding for prevention, screening, identification, research, and FASD-informed services. 

It reauthorizes and strengthens existing federal FASD programs, replaces the defunct National FAS Taskforce with a National Advisory Council on FASD, and establishes a FASD Center of Excellence as the go-to entity for state, tribal and local governments and non-governmental stakeholders seeking to develop or improve best practices for prevention, diagnosis, and intervention services. Find more information about the proposed legislation here. 

How Can I Show My Respect for Coloradans Impacted by FASD?

Whether you are an individual Coloradan or a Colorado organization that cares about ensuring that those who are using alcohol during pregnancy and those impacted by FASDs are treated with the respect they deserve and receive the support that they need, we need YOU to help ensure that Congress passes this vital legislation. 

Advocacy Opportunities

  • To advocate for the passage of the FASD Respect Act on behalf of an organization, sign on to the Letter of Support.
  • To advocate for the passage of the FASD Respect Act as an individual, reach out to Colorado’s senators and the representative for your district to schedule a meeting.

Need help? Find support with scheduling and hosting a meeting with your legislator here and/or by reaching out to Cassie Davis at cdavis@illuminatecolorado.org.

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It Can’t Just Be Me

It Can’t Just Be Me

Me:  “Will you please go downstairs and turn off the lights you left on in the bathroom, your room, and the den?!” 

My Son:  “Why?  Maybe later.”

Me:  “Well then let me rephrase it. If you don’t turn off the lights now, you’ll lose your device for the day! It’s not like I haven’t asked you to turn them off hundreds of times before. If you would do it in the first place I wouldn’t have to ask you!”

Welcome to an exchange between me and my son, more times than I’d care to admit, in telling him what I want him to do. Why this particular exchange?  Honestly, to save on the electricity bill.  Why in this tone?  Because of how frequently this conversation happens. More on this later.

Can I get an Amen?!  

On the night of my wedding, my brother advised me to, “not sweat the small stuff” in my marriage.  Of course, my brother wasn’t married at the time and that was over 20 years ago. Recently, I’ve heard this said multiple times in various conversations or digital platforms. This can’t be a coincidence, right? I’ve also heard it said in the following way, “what hill are you willing to die on?”  I can tell you this, when I hear these phrases being used it’s easy to receive, but not so easy to act upon. Especially, in the heat of the moment. Can I get an Amen?!  

I am a father who did, self-admittedly, a solid job of raising my children when they were infants, toddlers, and even somewhat into middle childhood. But, it was right about that time when middle school entered the picture that I started to become more of a parental tyrant. My biggest crusade has been to make sure the house is in order, but this has come with a price as it relates to the relationships I’ve had with my children.  

If you know middle-schoolers, this is about the time when they can become a BIT of a challenge in several ways, at least for me. It’s a particular attitude that they bring to the table that can press all of my buttons, including the ones I didn’t even know I had.  

I am a father who did, self-admittedly, a solid job of raising my children when they were infants, toddlers, and even somewhat into middle childhood.

But, it was right about that time when middle school entered the picture that I started to become more of a parental tyrant.

Anonymous

Can I get a Hallelujah?!  

My oldest son is on the FASD spectrum. I’ve put in hundreds of hours educating myself on FASD, after getting a diagnosis, and I can tell you several reasons why a child on the spectrum acts the way they do, and I can give you several ways how to properly respond. Here’s the challenge though, walking the walk is much easier than talking the talk. Can I get a Hallelujah?!  

To my credit, I’ve made some positive strides in parenting my son. Besides the consistency of my mindfulness practice, both he and I see therapists, and his therapist recently reported that he currently feels better about our relationship. Yes sir! I’d like to think it’s because I’m learning how to control ‘me’ rather than being so focused and frustrated on controlling my son.  Don’t get me wrong. I won’t let my son walk all over me, but there comes a time when I need to understand the importance of maintaining a loving relationship with him that will last for the rest of our lives. Nitpicking him in so many ways is not creating that road I want us to travel together. 

Don’t get me wrong. I won’t let my son walk all over me, but there comes a time when I need to understand the importance of maintaining a loving relationship with him that will last for the rest of our lives.

Anonymous

But, It’s Up to Me

One of the greatest lessons I’ve learned with FASD is that my son’s actions are due to trauma to the brain, not an intentional act of defiance. But many times, that’s the way I take it, like a personal attack on my leadership. Honestly, in our family of five my son probably has the most tender heart of us all. The last thing he wants to do is hurt me or any other member of our family, we’ll maybe his younger brother just a little- just kidding).

When he doesn’t turn off the lights it’s not to annoy me, but that’s the way I take it. Instead, it’s up to me how I control my tone when I speak to him, and it’s up to me to come up with an idea that might work out better for him to turn them off more frequently than he does, including brainstorming together. To his credit, it’s not just me having to do all the legwork. As he is getting older, he is playing more of a central role in figuring out ways to be at his best in our family dynamic.   

Now, I’m not saying I’ve made it to the mountaintop yet as it relates to being a dad. Matter of fact, I still could be in base camp. But I can honestly say I’m taking steps in the right direction because my son is well worth it.

About the Author

About the Author

Anonymous

This article was written by a father of  four beautiful children, three of whom have been adopted.  He is committed to sharing the experiences of his family impacted by FASD, anonymously, through the Becoming FASD Aware blog series to strengthen families and build awareness.

This photo was taken by the author’s son. while they were on a walk together. 

Colorado Substance Exposed Newborn Effort Name Change: Introducing SuPPoRT Colorado

Colorado Substance Exposed Newborn Effort Name Change: Introducing SuPPoRT Colorado

Our collaborative effort has a new name! Moving forward, the groups that were previously referred to as the Colorado Substance Exposed Newborns (SEN) Steering Committee, Family Advisory Board, and associated Work/Advisory Groups will be collectively known as Supporting Perinatal substance use Prevention, Recovery, and Treatment in Colorado (SuPPoRT Colorado). SuPPoRT Colorado will continue to work toward the same vision of a Colorado that equitably serves all families through prevention and reduction of substance use during pregnancy and provides multigenerational support for families to thrive, under a name that more accurately reflects our mission, values, and the work we do.

Aligning Our Name with Our Mission and Values

Hear from Family Advisory Board and Steering Committee members in their own words why they chose to make this name change:

The name change is important because it has a supportive person center description. I think it is important to keep the recovery from SUD during pregnancy in the title too so that it is also focused on the solution.”

Ashley Miller

Family Advisory Board member

“The new name, SuPPoRT Colorado: Supporting Perinatal substance use Prevention, Recovery, and Treatment in Colorado, is now inclusive of those who are affected by perinatal substance use throughout their entire lives. Effects of fetal alcohol exposure often require lifelong supports.”

Marilyn Fausset

Parent advocate, FASD Work Group Co-chair & Steering Committee member

“I really appreciate that the new name “SuPPoRT Colorado” shifts the focus from the newborn’s exposure to the support provided to both the newborn and the parent(s) related to prevention, treatment and recovery.”

Deborah Monaghan, MD, MSPH

Medical Director at Office of Children, Youth and Families-CDHS, Steering Committee member

“The name change reflects our commitment to learning with and from families, providers, researchers, and advocates. The new name better embraces our commitment to data-informed action that is family-led and community-based.”

Courtney L. Everson, PhD

Senior Researcher/Project Director at Colorado Evaluation and Action Lab, Data & Research Advisory Group Co-chair & Steering Committee member

“As our work has continued to evolve over the last 14 years, it only seems fitting that our language evolves too. Our new name “SuPPoRT Colorado” better reflects our continued commitment to families across the lifespan.”

Jade Woodard, MPA

Executive Director of Illuminate Colorado, founding Steering Committee Co-chair

“Rising to meet the current needs and opportunities in our state has been core to our collaborative work since the very beginning, and I’m looking forward to the impact we’ll have in this next phase as “SuPPoRT Colorado.”

Kathi Wells, MD, FAAP

Executive Director of the Kempe Center for the Prevention and Treatment of Child Abuse & Neglect, founding Steering Committee Co-chair

The Steering Committee was originally established in 2008 and is a subcommittee of the Colorado Substance Abuse Trend and Response Task Force. In 2019, the Family Advisory Board (FAB) to the Steering Committee was formed in order to elevate the voices of families who have experienced, directly or indirectly, the impacts of substance use during pregnancy. A reflection of the shared leadership of the Steering Committee and FAB, changing our initiative’s name to  SuPPoRT Colorado marks an exciting new chapter in our ongoing collaborative efforts to identify and implement strategies for reducing the number of families impacted by substance use during pregnancy and for improving outcomes for families across the lifespan.  

Beginning in April of 2021, the Steering Committee and FAB began a process to revisit our language and explore a name change to better align our name with our shared mission and values. Over the last year, the FAB and Steering Committee engaged in a process to identify ideas and ultimately choose our new name. Along the way, small ad-hoc groups of Steering Committee and Family Advisory Board members led the thinking with multiple opportunities for members across the effort to weigh in. We’re so grateful and excited to officially launch our new name and logo that was crafted with the input of so many dedicated partners.

Visit the SuPPoRT Colorado webpage to learn more about our history, vision, and mission,  click here to learn more about the current work, and sign up to join the effort here!

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When Is Much…Too Much?

When Is Much…Too Much?

As I watched the skit on Saturday Night Live play out entitled, Winter Formal, I came to the realization that those who created the skit, as well as those who participated in it had no idea about FASD, and its impact…

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