The FASD Project is Coming to Denver Feb 12-13

The FASD Project is Coming to Denver Feb 12-13

The FASD project is a film seeking to rapidly increase awareness of the risks of alcohol consumption in pregnancy within a short period of time, given the significant increase in alcohol consumption since the onset of the global pandemic.

This film aims to bring awareness about Fetal Alcohol Spectrum Disorders (FASD) and provide detailed scientific information on prevention, while aiming to start discussions about solutions to current problems facing the community. Through the course of our film journey, producers will be interviewing top scientists, clinicians, psychologists, lawyers, directors of Public Health offices and health institutes, and most importantly, parents and family members of individuals with a FASD.

They will follow ‘a day in the life’ of those living with and impacted by a FASD to present to the viewers how living with an FASD shows up in day-to-day life.

Focusing on impacted individuals who are doing well in addition to individuals who are not faring as well due to incarceration, homelessness or major mental health challenges exacerbated by FASD, this film is aim to share your lived experiences. 

As the Colorado Chapter of the National Organization on Fetal Alcohol Syndrome  (NOFAS), Illuminate Colorado is encouraging anyone willing to share their experiences to participate in this important opportunity. The FASD Project is tentatively scheduled to visit in the greater Denver  to engage with people willing on Friday February 12th and Saturday February 13th.

If you are interested in learning more or want to signing up, visit www.thefasdproject.com.

You can also get answers to many questions regarding things like COVID precautions during photoshoots by downloading the The FASD Project Photoshoot FAQs.

Share your FASD Story
FASD in Colorado, 2019: Caregiver and Provider Experiences Report

FASD in Colorado, 2019: Caregiver and Provider Experiences Report

It is fitting that on this last day of FASD Awareness month that Illuminate Colorado has the privilege of sharing a report summarizing the collaborative effort of Illuminate Colorado, Fetal Alcohol Spectrum Disorders (FASD) Identification Work Group, and various stakeholders across Colorado. Qualitative data was collected via a series of key informant interviews with parents, physical and behavioral health care providers, and other family-serving professionals in 2019.

READ >> FASD in Colorado, 2019: Caregiver and Provider Experiences Report

Illuminate Colorado leads the Fetal Alcohol Spectrum Disorders (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.

These recommendations from parents and caregivers impacted by FASD, as well as professionals dedicating their careers to children and families, will 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. 

Interested in becoming involved in moving these recommendations forward? Contact Us

Want to connect with other parents and caregivers of children with Prenatal Alcohol Exposure and FASD? Find Your Circle Every First and Third Friday

What Foster Parents Need to Know About FASDs

What Foster Parents Need to Know About FASDs

During the month of September, individuals and advocates raise awareness about the impact of Fetal Alcohol Spectrum Disorders (FASD). FASD is a term that is used to describe a range of effects that can occur as a result of prenatal alcohol exposure. Below is a blog originally published on CO4Kids this month featuring Jillian Adams, the director of strategic initiatives with Illuminate Colorado, the Colorado chapter of the national organization for FASD, about what foster parents should know about FASDs and what resources are available for foster parents in Colorado.

“I think something that is absolutely important for foster or kinship parents to know is that FASDs are greatly under-identified. They’re also really commonly misidentified as something else. So the collection of symptoms or the behaviors that are associated with a kiddo who has an FASD sometimes can be identified as autism, oppositional defiance disorder or other behavioral disorders,” said Jillian. 

A 2018 study published by the Journal of the American Medical Association indicated that as many as one in 20 elementary school students may have an FASD although few have been diagnosed. FASD is a broad umbrella term and the range of impacts that alcohol exposure can have on children can vary greatly. If treatment strategies that go with those other diagnoses for a child are not working, Jillian says, it’s valuable to consider evaluating for FASDs because the treatment approaches and strategies for supporting a child with an FASD can be different from the methods that are used to support a child with autism and other behavioral diagnoses. 

“Alcohol is a teratogen and it disrupts fetal development in a really particular way. It can literally make brains be put together differently,” said Jillian. “There are many variables (that can affect outcomes) such as the type of alcohol exposure in terms of the amount of alcohol and the period of time over which alcohol exposure happens.”

For toddlers and babies, the effects of FASD may present as sensory sensitivity such as being irritable in relation to high sensitivity stimuli as well as physical characteristics such as low birth weight and less frequently developmental abnormalities around the heart, kidneys and other organs. With older children in elementary and middle school, the impacts are seen through behaviors that impact the child or youth’s cognitive functioning and development.

“One of the ways that parenting someone with an FASD can be challenging is that people with an FASD oftentimes struggle with cause and effect relationships and almost all of our parenting strategies around supporting behavior hinge on cause and effect, like punishment or consequences,” said Jillian. “Oftentimes that just doesn’t work when parenting a kiddo with an FASD because they don’t get it. They’re literally not getting that link between a behavior they exhibited and a consequence they’re receiving.”

In addition to specialized training for caregivers of children and youth with FASD through the Child Welfare Training System, Jillian suggested several helpful resources for caregivers, including a behavior modification tool called The Eight Magic Keys, which was developed for people parenting children with FASD to modify the child’s environment to support the behaviors they are trying to see. 

Jillian also recommended parents and caregivers lean on others for support. Illuminate Colorado offers support groups for parents and caregivers of children with FASD. 

For foster and kinship parents, Jillian offers the reminder that is important for foster parents to approach biological parents with dignity and respect.

“Almost always a parent who drank during pregnancy wanted a healthy pregnancy and feels really complicated about having used substances during pregnancy,” said Jillian.  “I think that it’s important for foster parents who are continuing to work with bio parents to understand that more often than not this is someone who didn’t get the support they needed to be healthy and well in time for their kiddo to get to benefit from that.”

Although the effects of FASD will impact a person throughout their life, research shows that diagnosis, identification, and the right supports can lead to better outcomes and help people with FASDs live productive and fulfilling lives. Below are facts and resources for caregivers of children and youth with FASDs.

FASD Facts

      • There is no way to tell if someone has an FASD by looking at them.
      • An individual with an FASD may have an average or above-average IQ.
      • There is no known safe amount of alcohol use during pregnancy.
      • The needs of individuals and families impacted by FASD can change over time.
      • Parents need support too–and have options. Resources such as respite care and parent support groups can be valuable for caregivers of children or young people with an FASD. Learn more about parent support groups specifically for families with a child with an FASD.
      • The identification of FASDs is protective. Identifying that a child or adolescent has an FASD leads to better outcomes by ensuring the right supports are in place.
      • FASDs are lifelong and there is no cure, but there are approaches that can help support individuals and families. Developing successful interventions for individuals with FASD is possible. While there is no blueprint or “cookbook approach” to working with individuals with an FASD, there are strategies (like the Eight Magic Keys) that can help us be successful.

Child Welfare Training System (CWTS) Course

Fetal Alcohol Spectrum Disorders 

This online training, with customized content for both caseworkers and caregivers, explores the research around the impacts of fetal alcohol exposure and how FASD affects behavior and functioning. 

Other FASD resources for Foster Parents

Adopting and Fostering Children with Fetal Alcohol Spectrum Disorders

How Fetal Alcohol Spectrum Disorders Co-Occur with Mental Illness

The Language of Fetal Alcohol Spectrum Disorders

The Eight Magic Keys

Eight Magic Keys Worksheet

CDC Basics about FASDs

Parent Resources

Building Blocks of Brain Development

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“If I can help one child, one mother, one family survive and thrive while living with an FASD, then I have met my purpose on this earth…”

“If I can help one child, one mother, one family survive and thrive while living with an FASD, then I have met my purpose on this earth…”

Empathy is an important part of preventing Fetal Alcohol Spectrum Disorders. Illuminate Colorado reached out through our networks of families impacted by substance use to get more perspective to increase understanding and support for birth mothers and to strengthen recovery for women who drank during their pregnancies as well as to support their families.

Julene is a mother in recovery from her alcohol addiction for 22 years with a full time job as a special education teacher, plus raising her two children with FASD in their teens and early twenties. She regularly carves out time in her busy teaching schedule to talk with professionals about her family’s experiences to help strengthen support for other families.

One Mother Raising Two Children with FASD Shares Her Perspective 

While Julene is open about the fact that she drank routinely during her two pregnancies in small groups, to protect her and her children’s anonymity, we decided together that the best way to share their story was in a written Q & A below. 

Q. Why is it important to you to share your experiences as a birth mother of two children with FASD?

Addiction is a terrible cycle of events which can control one’s mind, body and spirit. If I can help one child, one mother, one family survive and thrive while living with an FASD, then I have met my purpose on this earth. My alcoholism has had life long term consequences for my biological children. I do not wear my addiction as an excuse, but rather an opportunity to demonstrate authentic living while learning from past misguided judgement.

Q. Describe the daily stresses of life today and how you are managing everything on your plate right now.

I have had to grieve the loss of the healthy child. I have had to reframe my expectations to meet the current reality. The grief comes in waves, as my son and I meet each of the milestones in life. Living life with an individual with an FASD takes love, patience, tolerance, and an open mind. In the meantime, I still have to address my own addiction tendencies, even though I have 22 years of sobriety. I have to take care of myself or else I have nothing to give my children. I go to 12 step meetings, I workout, I volunteer my time to give to others. Getting out of myself is often the best way to travel through my life’s challenges. I have friends that I can be honest with, and I have a therapist to guide my life. Balancing being a mother and a teacher means  I need to have good time management.

Q. Thinking back to the earlier years of your life, during your pregnancies, is there anything more that others could have done differently?

When I first got onto birth control at age 20, that would have been the time for an OB/GYN to have a serious conversation about the value of mental health as a woman of child bearing age. Instead, I was never asked what my personal choices regarding drinking alcohol were until my first pregnancy at age 27. That is 7 years of lost time for an intervention. I had just been raped on my college campus and it was quite clear that I was underweight and had an eating disorder. Putting a bandaid on my mental health by providing me with contraception was a good start, but not the final solution to an intervention

Q. Thinking about the panel discussions you’ve been a part of in the past, what is one thing that people are surprised to learn?

Perhaps something that might surprise folks is that I came from a family of money and with both parents well educated. I graduated from a private University and I was married to a man with a PhD in mathematics. Our social economic status was good and the pregnancies were planned. The only thing that was not anticipated was that I would not be able to stop drinking while I was pregnant.

Q. What are some ways others support you in your recovery today? How has the support you needed changed throughout your time in recovery?

My ability to get and stay sober has been through in-patient treatment for my alcoholism, 12 step programs, and medication to support my depression and anxiety. I still attend 12 step meetings 5 days a week, and take prescribed medication for my long term mental health needs. I have a therapist and a sponsor.

Q. What is life like for your children and what do you hope the future holds for them? What support do they need to thrive into adulthood?

 

My first born was lucky that her outcomes have been very positive. Although she was prenatally exposed to alcohol, my alcoholism was not as severe as later in my disease. She grew up in an educationally rich household with a family who could meet and address her every need. She has graduated from a private University and is employed as a computer software engineer.

My second pregnancy was impacted at a significantly greater level of prenatal exposure to alcohol. My son, pictured here, has Fetal Alcohol Syndrome, and has significant cognitive and neurological deficits. He is 22 years old and I am both his legal guardian and primary caregiver. He lives with me, and he keeps me grounded on my purpose. My son requires constant companionship and assistance with daily functioning and executive functioning. My hopes for him include gaining job skills and the ability to volunteer in the community. I want him to find joy in the abundance of love he gives to others, and find a partner who will love him as he is.

You Can Help

Stigma associated with substance use of any kind is real and parent shaming is not only ineffective if your purpose is to strengthen families, it is hurtful and wrong. Please join us in sharing positive support this month by thanking this mother for her openness during #FASDMonth. #ThankYou

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. Look for a release of recommendations for strengthening families to prevent FASD from parents and caregivers impacted by FASD this week.

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. 

If your family has been impacted by substance use and you would like to get more involved and share your experiences to strengthen families in Colorado, like Julene, please contact us

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Illuminating FASD

Illuminating FASD

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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Illuminate Colorado hosts first of several town halls on FASD in Pueblo

Illuminate Colorado hosts first of several town halls on FASD in Pueblo

The first of four roadshow events was held at the Arc of Pueblo, co-hosted by Illuminate Colorado, this week. These events, made possible through a mini-grant by the National Organization on Fetal Alcohol Syndrome (FASD), are designed to increase awareness around diagnosis and resources across Colorado.

The events also provide a venue to solicit statewide feedback on draft priority areas determined by a Gap Analysis conducted by the FASD Identification Work Group in 2019. These priority areas include:

  • decreasing financial burden on caregivers of children with an FASD,
  • preventing and relieving burnout among caregivers of children with an FASD,
  • increasing awareness of FASDs among educators, and physical and mental health care providers, and
  • increasing the use of a standardized screening tool for Prenatal Alcohol Exposure (PAE).

The day began with a presentation from staff members from Illuminate on definitions and common behaviors associated with a diagnosis under the FASD umbrella. There was also a focus on how the language we use to talk about families and individuals impacted by FASD and how using person-first language can help decrease stigma surrounding the issue. A panel discussion followed, including experts from Court Appointed Special Advocates (CASA) of Pueblo, the Arc of Pueblo, Rocky Mountain Children’s Law Center, The Colorado Department of Education, Insights Denver (a diagnostic and therapy clinic), Colorado Springs School District, as well as a mother parenting a son with an FASD.

Toward the end of the event participants engaged in a group discussion of barriers and opportunities in regards to improving access to services and information for families, including next steps.

Next up, Illuminate Colorado will partner with the Arc of Weld County on March 25th in Windsor and with the Arc of Montezuma County on May 7th in Cortez for similar events. Stay tuned for more information for a June event, likely a virtual town hall!

Click HERE to learn more about future FASD events.

Are you a caregiver and/or parent of a child or adult impacted by an FASD? Check out the Colorado Chapter of Circle of Parents to find out more information about FASD support groups.

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