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. 

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.

Y

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.

Y

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.

Y

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.

Y

 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.

Y

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. 

Y

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.

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