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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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...

Reflecting on a Year of Supporting Colorado Families Affected by Substance Use During Pregnancy

Reflecting on a Year of Supporting Colorado Families Affected by Substance Use During Pregnancy

What a 2021 we had in our collaborative efforts to move towards a Colorado that equitably serves all families through prevention and reduction of substance use during pregnancy and provides multigenerational support for families to thrive! We wish you rest and rejuvenation as the year draws to an end. 

Everyone who contributed to our work this year–whether as a work group co-chair, work group member, or another kind of project collaborator–brought their unique perspectives and commitment to supporting Colorado families. As many of our members shared in our recent member feedback survey, compared to going it alone, we are more effective in achieving our goals together.

About the Substance Exposed Newborns (SEN) Steering Committee

The Colorado Substance Exposed Newborns (SEN) Steering Committee was established in 2008 and is a subcommittee of the Colorado Substance Abuse Trend and Response Task Force.

The Colorado SEN Steering Committee is 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.

The priorities, strategies and activities of the SEN Steering Committee are guided by family voice experiences and leadership. Strategic planning, activity engagement and impact are each data-informed.

Reflecting on Progress We’ve Made in 2021

With the calendar year coming to a close, we wanted to reflect on some of our shared achievements in 2021:

    • Family Advisory Board and Steering Committee jointly developed Opioid Settlement Fund recommendations, which were presented to the Attorney General and Colorado Substance Abuse Trend and Response Task Force. We also began to explore a name change to better reflect our vision and values. The Family Advisory Board is also recruiting new members!
    • Data and Research Advisory Group provided recommendations for the Colorado Perinatal Substance Use Data Linkage Project and launched the design of a perinatal substance use data snapshot and outcomes dashboard.
    • FASD Awareness Work Group published a list of Colorado Providers Equipped to Diagnose Under the Fetal Alcohol Spectrum Disorders Umbrella and conducted outreach to statewide organizations and networks of family-serving professionals in order to increase awareness of Fetal Alcohol Spectrum Disorder (FASD) and offer the list of providers as a resource to share with families.
    • Plans of Safe Care Work Group updated the Colorado Plan of Safe Care document to reflect the newest evidence-informed best practices.
    • Policy Analysis Work Group developed a working draft of best practice organizational policy guidance around toxicology testing.
    • Provider Education Work Group developed and hosted an educational series on trauma-informed communication and care.
    • Lastly, in 2021 we launched our webpage–including information about our priorities, a subscription form, and a public calendar. Finally having an online presence feels like a milestone!

What’s on the horizon?

We look forward to what’s to come in 2022, including hiring a strategic initiatives manager focused on behavioral health systems who will support our efforts, and choosing a new name for our collective work. Onwards!

About the Authors

Diane Smith is a mother of three, a parent partner with Denver Parent Advocates Lending Support (DPALS) and chair of the Family Advisory Board to the SEN Steering Committee.

Dr. Kathi Wells, is executive director of the Kempe Center for the Prevention and Treatment of Child Abuse and Neglect and co-chair of the SEN Steering Committee.

Jade Woodard is the executive director of Illuminate Colorado and co-chair of the SEN Steering Committee. 

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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...

NEW Trauma-Informed Communication and Care Provider Education Series

NEW Trauma-Informed Communication and Care Provider Education Series

“We regularly hear from our colleagues that they recognize the importance of taking a trauma-informed approach to patient care, but very few have had the opportunity to receive formal training on trauma-informed care and communication,” said Dr. Laurie Halmo, pediatrician and toxicologist at Children’s Hospital Colorado and co-chair of the Colorado Substance Exposed Newborns Steering Committee work group focused on expanding healthcare provider education resources related to substance use and pregnancy with an emphasis on family leadership and addressing implicit bias. 

Designed by Healthcare Providers, for Healthcare Providers

Now, thanks to Colorado Substance Exposed Newborns Steering Committee Provider Education Work Group and the Colorado Perinatal Care Quality Collaborative, a NEW Trauma-Informed Communication and Care Provider Educational Series designed by healthcare providers, for healthcare providers, is available beginning next Monday. Each session grounded in the perspective of someone with lived experience related to substance use and pregnancy underscores just why this topic is so important.

Anyone who interacts with perinatal patients and their families in a clinical setting, from gynecologists, obstetricians, neonatologists, and pediatricians, to mental/behavioral healthcare providers and social workers, are encouraged to attend. Clinical professionals will walk away with the knowledge and tools to care for individuals in the perinatal period and those who are impacted by substance use in a trauma-informed way that leads to better experiences and outcomes for all. 

NEW Trauma-Informed Communication and Care Provider Education Series 

The educational series includes:

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an overview of the impact of trauma on women’s health, mental health, substance use, and experiences with obstetrical care

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effective trauma-related screening questions and practical provider and team approaches to improve communication and trauma-informed care in obstetrical settings

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practical tools for recognizing and reducing stigma and bias in interactions with patients

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practical tools for optimizing brief clinical interactions with individuals impacted by perinatal substance use in a trauma-informed, non-stigmatizing way, including motivational interviewing, attending skills, and the LEAP (Listen, Empathize, Agree, Partner) approach

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. 

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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