What good was his diagnosis anyway?

What good was his diagnosis anyway?

I finally realized my adult son was not going to be able to live independently when he couldn’t hold down a job and had several arrests for theft. It was not fun going to court or visiting him in jail. I was seriously afraid he’d end up in prison.

I regret waiting to get a diagnosis until he was 23 and by that point I was desperate. What was I thinking? (“It is expensive; we know he has issues, but why get a diagnosis?”) Now I understand the importance of a diagnosis and want to share our story—how it helped my son, and me,  to become Fetal Alcohol Spectrum Disorders (FASD) aware.

Early diagnosis is very important. Ensuring access to quality and affordable diagnostic services can support families in receiving additional services and support. Getting a diagnosis of a FASD for yourself, your child or loved one can result in additional support to thrive into adulthood, like developmental disability services or educational services. Here are my six reasons to get the diagnosis:

 (Dana Cadey / For the Camera) Emmaus Holder, left, is pictured with fellow FASD advocate Marilyn Fausset and blog author, featured in Colorado Daily article Cross-country bicyclist raises awareness and connects with local advocate for fetal alcohol spectrum disorder.

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An evaluation from an FASD-aware neuropsychologist and the resulting report, with a fetal alcohol syndrome (FAS) diagnosis, helped me explain my son’s behaviors—like can’t vs. won’t. I look back and see so many times when I thought “he wouldn’t.” Now I realize “he couldn’t.” I realize that although he had many diagnoses over the years, FAS trumps them all. It’s brain damage. I now understand his behaviors in an informed light. I can focus on interventions recommended by FASD experts and parents.

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In Colorado, an FASD-related diagnosis, coupled with a low adaptive score, qualified my adult son for developmental disability (DD) services. No need for a low IQ. I often think this was life-saving (not to mention money-saving). My son receives SSI, Medicaid, and he has a comprehensive DD waiver and lives in a host home, with all his support services Medicaid-funded. 

PROTIP – For children, an early diagnosis combined with DD services can help you avoid a long wait list for adult services.

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My son is an adult. He doesn’t want to live with me (and vice versa). Can I be mom the same way to an adult as to a child? No. Services based on his diagnosis gave us this option—he lives outside our home—and somebody else handles his medical visits and meds. And he knows (to an extent) why life has been so challenging for him—the fetal alcohol exposure. He is not at fault.

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 If I’d known about his FAS sooner, I believe his education (especially his special education supports and accommodations) could have been more geared toward his true needs/his real disability. 

PROTIP – Colorado recognizes an FASD diagnosis as “Other” to qualify for special education services.

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If my son gets in trouble with the law again, I know I can ask them to consider his disability. We already experienced a lowered sentence and charge after I could attest that he had just qualified for DD services. 

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I have recently applied for social security benefits (I’m at that age!). My son will qualify for additional social security payments based on my social security, as an adult disabled child.  Now, and when I pass, he will receive money to help with living expenses. 

PROTIP – Diagnosis before age 23 would have helped on this one!

I think back to when we signed our son up for culinary arts classes at Colorado Mesa Community College. He was living in the dorm, with support in place. If I’d had the diagnosis before that, I would have saved a lot of money—and avoided a failure. The neuropsychologist’s report pointed out that he couldn’t (not wouldn’t) handle such a setting–not with his poor executive functioning. Unknowingly, I set him up to fail. 

I look at the importance of a diagnosis. We want our kids to succeed as best they can. For them to do so, we need to see them as they are–to know the truth, informed by an FASD-aware diagnosis. The truth of FASD is that support can be tailored to the individual–to how their brain and body works. My son deserves that, and I owe that to him and now hope to help other families both follow and avoid walking in my footsteps. 

PROTIP – It can often be difficult for families to find a provider in Colorado equipped to make an FASD diagnosis. So, members of the Substance Exposed Newborns FASD Workgroup and families impacted by FASD, including myself, worked together to create a list of providers equipped to diagnose under the FASD umbrella. Illuminate Colorado, home to the Colorado Chapter of the National Organization on Fetal Alcohol Syndrome (NOFAS), is committed to ensure this list remains a resource for families into the future. 

About the Author

Marilyn Fausset is a mother committed to sharing the experiences of her family impacted by FASD through the story-telling Becoming FASD Aware blog series.

Family Voice Makes a Difference Illuminating Systemic Change

Family Voice Makes a Difference Illuminating Systemic Change

Families are experts on their children and by extension the programs intended to support them in strengthening their families and addressing challenges. It is for this reason that Illuminate Colorado looks to parents and caregivers with lived experiences as the driving force within coalitions and networks focused on systemic change. We connected with three Coloradans giving voice to their experiences through two collective spaces “walking the walk” so to speak when it comes to the family voice movement to get their reflections on the impact Illuminate is having in the field.  

Increasingly, there is an effort to involve parents and caregivers from all walks of life in the decision-making process of systemic change, as well as program improvement. “Nothing for us without us! It is important that we listen and honor lived experience. We need to uplift and celebrate lived experience by saving them a seat at the table,” said Heather Hicks, a mother of two and a family voice representative for the Colorado Partnership for Thriving Families. “The Partnership”, as it’s more commonly known, is a collaborative space aiming to create conditions where children and the adults in their lives can thrive. The Partnership is building collaboration at the state and local level to align funding, priorities, regulations, outcome measures and implementation – across sectors and jurisdictions to create a strong family well-being system that supports families. As the backbone support team for the Partnership, Illuminate is guiding vision and strategy, supporting aligned activities, establishing shared measurement practices, cultivating community engagement and mobilizing resources in support of this collective effort. 

“I have worked in various spaces similar to the Colorado Partnership for Thriving Families. I have been the parent that professionals have refused to listen to. I have been that parent that professionals look in the face and nod their heads then do nothing. I have been the parent that has continued to cry out and strive for equitable spaces for families so that they come and participate in the decisions that are being made for them. I have been the parent that has spent years fighting for change and has seen very little transpire from it. So to come from that and walk into a space where Illuminate has opened their arms and hearts to not only hear what we have to say, but to boldly act upon what we have to say – it is a beautiful thing,” said Hicks. 

Hicks and Fikile Ryder, another mother of two engaged as a Partnership family voice representative, have been involved in this collaborative space for more than a year now. They both co-founded the Partnership Family & Caregiver Space and serve on the leadership team for the Partnership. “Illuminate is an unsung leader in the equity charge for lived experience. What makes them special is that they lead with compassion and heart. As an organization, they have unconditionally supported our asks and needs,” shared Ryder.

When the two women spoke to the Partnership leadership team about fair compensation for families and lived experience working with the Partnership, they said it was an extremely awkward and difficult conversation to have. As women, they felt the social constraints against them that make it even more difficult to advocate and ask for compensation for their time and talent. Reaching out to Illuminate to talk about how they were feeling was a moment the women recognized as the moment “the tables turned a little bit and they felt like equals who were being valued and heard”, crediting Illuminate for acting quickly to strive towards a solution. “We were met with support, kindness, advocacy, ideas, kind words and overall love. This was a turning point for the Family and Caregiver Space,” said Ryder.  

From that moment on efforts were made to demonstrate a real commitment to equity within the Partnership by compensating family voice representatives for their time away from their personal and professional lives, increasing pay for family voice partners to $50 per hour. And while Illuminate is heartened to hear that the process of getting to this milestone in family voice compensation felt positive and swift, Illuminate is also quick to credit philanthropic support and a shared desire among all of the Partnership Leadership Team for this additional investment. It is unique among the collective spaces that Illuminate supports right now, however, honoring the lived experiences of families is not. The Colorado Substance Exposed Newborns Steering Committee was 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.

Diane Smith is a mother of three who has a leadership role within this steering committee, as well as the Family Advisory Board. “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.   

The FAB has been instrumental to the understanding of barriers in seeking support, health care, including treatment and other services, and informing of priority-setting within the steering committee to raise awareness and best serve the needs of families impacted by substance use. Stepping into an advocacy role like this one can be hard for parents and caregivers and Smith points 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. When asked what decision-makers can do to support family voice partners and what non family-voice partners can do to create spaces where everyone feels valued and heard, Smith reminds organizers to be flexible and meet families where they are at by communicating by phone, email, text or even in person to ease the stress of sharing their story. 

Five Things We've Learned from Collaborating with Family Partners

Illuminate’s work within the Spectrum of Prevention fostering coalitions and networks to ensure continued progress on policy priorities, identify opportunities to protect existing policies that are serving families and enhance policy implementation has expanded over the last several years. The organization now supports eight different collaborative spaces to advance child maltreatment prevention in Colorado, with Landry facilitating discussions with family voice partners across many of these spaces. She gives five quick tips for organizations and collaborative spaces based on what we’ve learned from collaborating with family partners: 

  1. Ask family voice partners what their goals & visions are for systems-level projects.
  2. Involve family voice partners from the very start of projects.
  3. Don’t make assumptions about what families need. Ask questions, listen, learn, adapt, and grow.
  4. Provide equitable compensation to family voice partners for their time and expertise.
  5. Support family voice partners and non family-voice partners to create spaces where everyone is and feels valued and heard, creating equitable decision-making processes. 
The Time is Now to Make Wise Investments on Local and State Levels

The Time is Now to Make Wise Investments on Local and State Levels

In the months and years ahead, Colorado State and local leaders have the opportunity to spend both American Rescue Plan Act (ARPA) funds and Opioid Settlement Funds. Being a local-control state is both a blessing and a curse in so many ways when it comes to investing in strengthening families. On one hand it allows local county commissioners and government agencies the flexibility necessary to listen to the children and families in the community and respond to the unique challenges they face. On the other hand, it requires a considerable amount of time and thoughtful coordination to communicate best practices, evidence-informed research, and lessons lived and learned to help county commissioners and State leaders alike make informed investments.

Through our roles as both a convener of collaborative spaces and experts on the prevention of child maltreatment, Illuminate Colorado proudly guided the collaborative development of investment recommendations to aid State and local decision-makers in prioritizing family strengthening to the most of this opportunity. Illuminate led both the Colorado Partnership for Thriving Families ( the Partnership) and the Colorado Substance Exposed Newborns (SEN) Steering Committee, a subcommittee of the Colorado Substance Abuse Trend and Response Task Force, and it’s Family Advisory Board, regarding ARPA funds and Opioid Settlement Funds respectively, to identify concrete investments Colorado can make to transform systems and services to build brighter childhoods.  

Investing American Rescue Plan Act Funds to Prevent Child Maltreatment and Promote Family Well-Being

The pandemic has impacted so many different aspects of our communities, and the challenge on local, state, and federal levels is to determine how to prioritize allocation of these ARPA funds. Decision-makers within county and state agencies are having to balance and prioritize everything from physical infrastructure to community infrastructure.

The Partnership members including; Colorado Counties Inc., state and local public health and human services departments, families with lived experiences and Illuminate Colorado, created recommendations for county commissioners to guide investing ARPA funds in early childhood and reap long-term benefits of these investments to build stronger communities and families. 

Wise investment of American Rescue Plan Act funds will go a long way to address pronounced need and opportunities during pregnancy through the first five years of life.

Nobel-prize economist, James Heckman, shows that every dollar spent on high quality, birth-to-five programs for disadvantaged children delivers a 13% per annum return on investment.

The recommendations include an overview of why it is important to invest in the prevention of child maltreatment and promotion of family-well being, data on the pronounced needs and opportunities of families during pregnancy and through the first five years of life, and specific recommendations on how ARPA funds can be leveraged to support families in Colorado.

Setting Up a Framework for Dedicating Opioid Settlement Funds to Children and Families Impacted by Perinatal Substance Use

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. 

Investing in tailored substance use disorder treatment and recovery services for families leads to better outcomes, cost savings and stronger communities. 

While pregnancy and motherhood can be a time of increased motivation for substance use disorder treatment and recovery, an absence of tailored services creates a gap between need and access. Substance use disorder treatment that supports the family as a unit has proven to be effective for maintaining maternal recovery and child well-being. Residential treatment programs serving women and children produced nearly $4 in savings for every $1 invested through reductions in child welfare costs, crime, foster care and low birth weight babies.

With both support and leadership from Illuminate, the Colorado Substance Exposed Newborns Steering Committee and its Family Advisory Board which elevates the voices of families who have experienced, directly or indirectly, the impacts of substance use during pregnancy, jointly developed a set of guidelines and recommendations for how opioid settlement funds with a focus on building Colorado’s statewide capacity to: 

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

Share these recommendations with your regional, county and state agency decision-makers.

American Rescue Plan Act Funds Recommendations

Opioid Settlement Funds Recommendations

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.

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