Five Minutes With My Congressman

Five Minutes With My Congressman

Recently, I had a chance to talk with an aide from the 4th district represented by Congressman Ken Buck about the FASD Respect Act (H.R. 4151 and S.2238).  This piece of legislation could change my family’s life and potentially prevent hundreds of thousands of families from having to follow in our footsteps. 

With no more than five minutes to plead my case, I initially thought of giving the Congressman a snapshot of our family’s life and all the ways exposure to alcohol before birth  has negatively impacted our son, now diagnosed with Fetal Alcohol Spectrum Disorder (FASD). But, I decided this wasn’t the direction I wanted to go. It sounded too much like a list of complaints, and I didn’t want to sound like a whiner because my son is a loving, good-humored, kind-natured, individual full of potential and resilience. Instead, I made a convincing statement of truth that, I hope, left an indelible impression to help convince our Congressman to co-sponsor  the FASD Respect Act, authorizing $118 million for FASD prevention, screening, identification, research, and FASD-informed services by federal, state, local, tribal and private stakeholders.

I used my five minutes to explain what the FASD Respect Act would mean to our family, the multitudes of families who have loved ones diagnosed with FASD and the many, many people in this country that don’t even realize that FASD exists. As it stands, FASD is a national epidemic of catastrophic proportions. One that few seem to be aware of. This needs to change. It is estimated that up to 1 in 20 U.S. school aged children may have an FASD. It’s 100% preventable and caused when a fetus is exposed to alcohol before birth. You may not realize this, but alcohol is the leading cause of preventable brain injuries.   

We did not find out our son had FASD until he turned 14. That is an injustice to him, more than anyone. We should have known about this the day we brought him home, through foster care, but so many people were (and still are) completely unaware of what FASD is – including the medical field! This means even more people in the general public are unaware and families who have adopted children are particularly unaware. 

 

Remember, this is a SPECTRUM disorder.  That means FASD presents itself in various extremes.

 

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

We adopted our son, who has FASD, when he was only a few months old.  Symptoms were not easy to detect at this age and he was meeting most of his developmental milestones.  What would have been helpful was knowing that his mother was drinking alcohol when he was in utero. This is another major issue with FASD.  What issue is that you may ask? Getting women to actually share that they drank while pregnant for fear of public ridicule.  We, as a society, must not hold judgment over women who have done this.  Rather, they should be supported in what to do next.  Don’t stigmatize another human being when there are many areas that each of us can grow in and learn from about others and ourselves.

Symptoms in our son really started showing up when he was a little bit older in his infancy, mostly in the form of sensory processing disorder.  He was hyper-sensitive to certain sounds, certain bodily feelings and certain textures and tastes that caused him to become extremely agitated.  He would have complete meltdowns if the wind was too strong.  Little did we know that these were the beginning signs of FASD.  

As he has gotten older he’s shown even more significant signs.  These symptoms have included problem-solving skills (specifically math), memory issues (doesn’t remember something I literally told him 10 minutes before), ability to remain attentive (Over the Hedge- Squirrel!), difficulty in maintaining friendships (he has difficulty associating with his peers), and understanding consequences (I’ve tried every reward/consequence strategy in the book, to no avail).  You might be thinking, “This is just how teenagers are!”  I assure you, this is only the tip of the iceberg.  Remember, this is a SPECTRUM disorder.  That means FASD presents itself in various extremes.  

Thankfully, information about FASD is becoming more readily available, but not nearly enough. The FASD Respect Act can rapidly accelerate the prevention and the education of the masses. If we had only known about our son’s FASD earlier we would have sought specific treatments recommended by professionals who knew what needed to be done once the diagnosis was made.  We informed our son’s pediatrician as well as others including the foster care system, various medical practitioners, therapists, psychologists, psychiatrists and school systems throughout the years about what we were experiencing.  Not one of them ever mentioned FASD as a cause. 

Still, it is the season of gratitude and I’m thankful that our son has his FASD diagnosis, and I’m thankful that I was heard by the Congressman’s office. I hear stories on shows like The FASD Success Show and read stories of adults who have come to this diagnosis later in life struggling to live independently, unable to hold down a job, or even getting into trouble with the law. These struggles later in life for families unaware of FASD in their lives will be so much more costly than not acting right now. The more we know the more we can act. The more we can act, the more we can bring about change. As much hurt, anger and sadness that FASD has caused our family, it has also brought out an absolute determination to bring about change; and given me an opportunity to connect with a “united front” of parents, adult survivors and organizations, like FASD United and the Colorado Chapter of FASD United – Illuminate Colorado, fighting for resources needed to increase education and prevention

We believe our son will continue to positively contribute to the world around him, but we also know he and every other individual with FASD can be much better represented and much better served if the FASD Respect Act is passed in the House and Senate.  

Our History Together

In 2017, the Colorado Chapter of NOFAS (now called FASD United) was among the four independent nonprofit organizations in Colorado that consolidated to leverage resources and increase capacity to more effectively prevent child maltreatment in Colorado. Since then, we’ve grown exponentially in service of our mission to strengthen families, organizations and communities to prevent child maltreatment.

LEARN MORE   

About the Author

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. 

Illuminating Child Care is Expanding to the San Luis Valley

Illuminating Child Care is Expanding to the San Luis Valley

Over the course of the next couple of months, the Early Childhood Council of the San Luis Valley is taking Acorn – Illuminate’s newest renovated RV providing on-site child care – on a tour of the San Luis Valley, stopping at locations that are helping to strengthen families–like recovery and treatment centers–to showcase this exciting new service that is by the people of the Valley, for the people of the Valley.

“The Early Childhood Council of the San Luis Valley envisions a community where all members prioritize and invest in our children to build a thriving society. This means supporting families and meeting them where they are. We strive to support parents’ health & wellbeing so they can in turn support optimal development of their children. What many of our families with high needs require is timely and coordinated services and this on-site child care classroom does just that! In partnership with Illuminate Colorado and our local service providers, we can make a difference in our community. We are excited to be able to pilot this greatly needed service in the San Luis Valley,” said Sherri Valdez, executive director of the Early Childhood Council San Luis Valley.

The early years of life – from belly to age eight – are very important for 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! Because of this, the experiences and relationships that young children have in the early years can impact them for life.

When families struggling to manage life’s challenges and the demands of raising children are also faced with the challenge of finding high quality child care, it can stand in the way of strengthening families. In fact, studies have shown difficulty finding child care is a stronger predictor of maternal neglect than almost any other factor, including mental health, severity of drug use, history of abuse as a child & use of public assistance.(1) This is why Illuminating Child Care is such an innovative and essential part of solving the child care crisis in Colorado.

Beginning with Honey last year servicing the Denver Metro area, Illuminate unveiled the first innovative on-site child care classroom.  “As a single mother, and as a single mother in recovery, the greatest barrier to me being able to complete those tasks that I need to complete and stay on track would be child care,” said Karie, one of several parents who depended on Illuminating Child Care when Honey first hit the road. “Honey is allowing me, as a mother, to stay on top of those other parts of my life so well.” A year later, we’re expanding to the San Luis Valley thanks in large part to the leadership of the Early Childhood Council of the San Luis Valley.

The cornerstone of Illuminating Child Care is its renovated RVs, which serve as on-site child care classrooms providing drop-in care for young children. Acorn was created with its fun-loving squirrels and custom features designed with healthy child development in mind.

Children learn through play, and creating a classroom that offers hands-on manipulation, role-play and practice, free choice, cooperation, and decision-making experiences serve just this purpose. Age and developmental appropriate items, such as climbing stairs, the book nook, and the toddler potty and sink, were designed around a young child’s unique needs.

Parents and caregivers will be able to drop off their young children at partner locations and feel confident that the teachers on Acorn will help their little ones learn and grow while they are getting the support they need to strengthen their families.

“We are so excited about this next phase of Illuminating Child Care and the partnership with the San Luis Valley. It takes all of us to create brighter childhoods for all children in Colorado and, together, we can take some of the weight off of our parents’ shoulders as they are working to tackle some really hard challenges,” said Patsy Bruce, child care manager at Illuminate Colorado.

Become an Illuminating Child Care Partner

Download the Illuminating Child Care San Luis Valley Informational Flyer.

 

Citations

1 Cash, S. J., & Wilke, D. J. (2003). An ecological model of maternal substance abuse and child neglect: Issues, analyses, and recommendations. American Journal of Orthopsychiatry, 73(4), 392-404; Yang, M. Y., & Maguire-Jack, K. (2016). Predictors of basic needs and supervisory neglect: Evidence from the Illinois Families Study. Children and Youth Services Review, 67, 20-26.

Shape Our Future–Vote!

Shape Our Future–Vote!

Every election is an opportunity to shape our communities, and the 2021 election is no different. While there are no people on the ballot, there are a number of state and local financial issues that will impact the lives of Colorado kids and families. 

The 2021 election is on Tuesday, November 2nd.

Voting is our chance to stand up for our families and our communities, and we ALL deserve to have our voices heard this election season.

By now, you likely have already received your ballot by mail. However, if you’re not registered to vote or haven’t seen your ballot yet, it’s not too late! Check out Go Vote Colorado to register to vote, check your registration, and more. You can also find information specific to your county here.

Here are some key dates in Colorado: 

    • Now through November 2 – Drop boxes are available and polling centers are open across the state. 
    • Tuesday, October 26 – If you haven’t mailed your ballot by this day, then plan to drop it off in a ballot box or head to a polling center instead.
    • Tuesday, November 2 – Election Day! Polls will be open 7am-7pm.

In Colorado, you can register to vote and vote in person up to 7pm on Election Day. If you filled your ballot out at home, be sure to turn it in at a dropbox by 7pm!

Voting lets us weigh in on the issues that are most important to us. Be a role model for your community and vote! 

Need more information before you fill out your ballot?

If you’re looking for the 2021 Blue Book, you can find it: 

And, to learn more about how 2021 ballot measures impact kids and families, check out the Colorado Children’s Campaign Voter Guide.

Related Posts

Illuminate Colorado Is Hiring an Evaluation & Strategic Learning Associate

Illuminate Colorado Is Hiring an Evaluation & Strategic Learning Associate

We are excited to announce that we are hiring an Evaluation & Strategic Learning Associate!

Under the guidance of the Director of Evaluation and Strategic Learning, the Evaluation & Strategic Learning Associate will work across the organization to support Illuminate Colorado’s data collection, evaluation, and strategic learning efforts.

Experiences, Skills and Qualifications include:

    • One to three years of data, evaluation, and/or research experience and/or academic degree where data, research, and/or evaluation skills are acquired.
    • Strong interest in building and maintaining a database to support organizational learning and improvement.
    • Passion for learning and mobilizing different forms of data to improve operation and impact
    • Commitment to advancing social and racial equity through data and evaluation practices.

Compensation: This is a full-time position eligible for benefits. Starting salary is negotiable and commensurate with skills and experience in the range of $45,000 – $55,000.

If this sounds like an exciting opportunity to you, click on the link below for more details about the position. The deadline to apply is November 30, 2021.

View the complete job posting here.

To Apply: Please submit a cover letter, resume, and three references via email with “Evaluation and Strategic Learning Associate” in the subject line to hiring@illuminatecolorado.org.

Has your family been impacted by substance use during pregnancy?

Has your family been impacted by substance use during pregnancy?

If the answer to this question is yes, then there is an opportunity waiting for you to channel your experiences into change. Several spots on the Family Advisory Board are opening up in 2022. Your perspective is needed to build a Colorado that equitably serves all families through prevention and reduction of substance use during pregnancy and provides multigenerational support for families to thrive. That is the shared vision of the Colorado Substance Exposed Newborns (SEN) Steering Committee, established in 2008. This collaborative space is a subcommittee of the Colorado Substance Abuse Trend and Response Task Force tasked with identifying and implementing strategies for reducing the number of families impacted by substance use during pregnancy and for improving outcomes for families across the lifespan.

In 2019, the Family Advisory Board (FAB) to the Steering Committee was formed with the purpose of elevating the voices of families who have experienced, directly or indirectly, the impacts of substance use during pregnancy in order to

  • understand barriers in seeking support, health care, including treatment and other services, and
  • inform priority-setting within the Substance Exposed Newborns Steering Committee to raise awareness and best serve the needs of families impacted by substance use.

Anyone who has lived experience around substance use and pregnancy is encouraged to apply by completing the interest form to join this welcoming space to folks who identify as women, non-binary, and/or gender non-conforming. 

WANTED: Family Advisory Board Members

Take the first step by completing the Family Advisory Board Interest Form and we’ll be in touch soon!

A great example of how FAB members are making a difference is in the recently released Opioid Settlement Funds Recommendations jointly developed by Illuminate, the Colorado Substance Exposed Newborns Steering Committee and its Family Advisory Board. In the coming months and years, Colorado will also continue to receive funds from settlements and court rulings resulting from numerous lawsuits against drug companies, distributors and pharmacies over their role in the opioid crisis. It’s money that can — and should — be channeled to programs and services that equitably serve all families through prevention and reduction of substance use during pregnancy and provide multigenerational support for families to thrive.

This set of guidelines and recommendations for for State and local leaders set up a framework for dedicating opioid settlement funds to children and families impacted by perinatal substance use with a focus on building Colorado’s statewide capacity to:

  • align efforts,
  • apply lessons from data, and
  • recognize and respond to emerging needs.

The Steering Committee priorities, strategies and activities, like these recommendations, are guided by family voice experiences and leadership. Strategic planning, activity engagement and impact are each data-informed. The Steering Committee is convening, supporting and guiding the advancement of the four priority areas, with FAB members focusing in on the priority area of reducing stigma around accessing substance use disorder treatment and recovery supports for pregnant and parenting people.

Diane Smith, a mother of three who has a leadership role within this steering committee, as well as the Family Advisory Board, shared her insight in a recent article Family Voice Makes a Difference Illuminating Systemic Change.

“It is important to involve families with lived experiences as voice partners in program improvements and systemic change because it is the best way for our systems to evolve. When people are trying to identify what works, what doesn’t work, and how we change things for the next family, it is important for families to give input and share their experience,” said Smith.

Stepping into an advocacy role like this one can be hard for parents and caregivers and Smith pointed to a strong relationship with Hattie Landry, Illuminate strategic initiatives manager for making her experience a positive one. “It is important for FAB members to feel like they are vetted into the situation and feel comfortable with the group of individuals before they share their story. Hattie makes us feel comfortable, she shows a lot of empathy as a person and colleague,” said Smith. 

This is an amazing opportunity to serve in a role advising big changes and investment related to substance use and pregnancy by taking on the responsibilities of FAB members, including:

  • Encouraging greater understanding of the lived experience of individuals and families impacted by perinatal substance use.
  • Actively participating in establishing strong partnerships with Steering Committee members.
  • Discussing and evaluate practices, programs and services and provide recommendations that respond to the unique needs of families.
  • Channeling needs, concerns and recommendations to the Steering Committee for consideration.
  • Giving input based on your own experience, while recognizing that other members’ experiences may be different from your own.
  • Collaboratively working on projects identified by the FAB, including story-sharing planning and implementation.
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Member Roles & Responsiblities

Download the Family Advisory Board member roles and responsibilities

Join the Family Advisory Board

Take the first step by completing the Family Advisory Board Interest Form and we’ll be in touch this fall.

Connect with Us

Please reach out with questions about this or other opportunities to make a difference by sharing your lived experiences. It matters.

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