By: Bonnie Miller Rubin

You may know that there’s legislation out there – called the FASD Respect Act — a bipartisan bill that can be a game-changer for our families. But you may not know the volunteers behind the scenes who are working diligently to move this from the drawing board to reality.

Meet three of them:

1.  Susan Shepard Carlson
Retired judge
Home: Lake City, Minnesota
What I do for fun: Boating on the Mississippi River and caring for our dog, Dexter

It would be difficult to talk about the FASD Respect Act without mentioning Susan Shepard Carlson in the same breath, The retired Hennepin County Judicial Officer got tired of seeing the same kids come before her on the bench and their difficulty navigating the justice process – from missing court appearances to violating probation.

So, she started searching for answers, delving into research about the brain. The common denominator? Prenatal alcohol exposure. In 1998, she founded MOFAS (Minnesota Organization on Fetal Alcohol Spectrum) now known as Proof Alliance, which became a beacon for desperate families  – not just in her home state, but nation-wide.

Fast-forward 20 years and Carlson is still hearing the same heartbreaking stories from parents and getting the same blank looks from teachers, police and social workers whenever she talks about FASD. That’s why she has devoted the last three years on this $78 million measure.

[pullquote align=”left or right”]“We need [advocates] to go full steam ahead before Congress returns from their August recess”[/pullquote]Even after landmark studies documenting the disability – from the American Bar Association, the American Academy of Pediatrics and others – “people still don’t know about it,” she said.  “That’s why this bill matters.”

The Respect Act aims to address decades of disinvestment, providing resources for educating all those professionals that a child may encounter on a daily basis. “This means parents will not be constantly explaining what FASD means and what is needed for their child. It is also geared to addressing and removing existing barriers, such as getting a diagnosis or services. All this will lessen the load for families and make FASD recognizable as a disability needing understanding.”

What can advocates do?

“We need them to go full steam ahead before Congress returns from their August recess,” she explained. “Our goal is to get as many co-sponsors as possible. The more show of support, the more likelihood the bill will get a hearing and the more likelihood it will pass…because if we don’t change the systems, we’re just fishing upstream.”

2.  Kathy White
Mother of six, ranging from 5 to 15 years old.
Home: Overland Park, Kansas
What I do for fun:  “Nothing. I’m the Mom taxi.”

Two years ago, when Kathy White and her husband, Dan, heard about a 3-year-old boy whose mother died, they knew they had to do something.

The boy couldn’t live with his grandmother because she resided in a retirement village with a “no kids” policy. White knew that Zachary had significant delays, but thought that their parenting experience and an abundance of love could handle anything. She was wrong.

“Nothing prepared us for what it was like to raise a child with FASD,” she said. “He requires more than my five other kids combined.”

[pullquote align=”left or right”]“I don’t know that they see me as an advocate, but just a Mom who is trying to do right by her kid.”[/pullquote]The Whites immersed themselves in their son’s problems, shuttling between a maze of clinicians, from cardiology to psychiatry. They faced a steep learning curve, especially when it came to behavior problems. For example, a typical transition for the  rest of the family –  going to one of their kids’ baseball games or a school performances – could ignite a blistering  meltdown for Zachary.

“It’s tough, but I remind myself that he didn’t ask for any of this…and bouncing around in foster care would have been disastrous for him.”

Maternal drinking was not disclosed until the adoption was final, but it wouldn’t have mattered, “because educators don’t know what to do…they don’t know that he can’t remember the rules from one day to the next,” she explained.

So, when White heard about a proposed measure to help families like hers, she channeled her energy into recruiting others, reaching out to parents all over Kansas. (The state’s threadbare safety net has only one FASD-trained doctor, who sees a meager 24 kids a year, she said).

Additionally, White spoke out at a Senator’s town hall meeting, bringing attention to the cause and hoping other lawmakers will follow. “They’re actually returning my calls,” she said, with a touch of astonishment.

Now, Senator Jerry Moran, a Republican, has signed on as a co-sponsor of the Respect Act. “I don’t know that they see me as an advocate, but just a Mom who is trying to do right by her kid.”

3.  Kathy Hotelling
Clinical psychologist and mother of a 27-year-old daughter
Chapel Hill, North Carolina
What I do for fun:  Travel, reading, swimming and yoga

When it comes to raising the profile of FASD, Hotelling has done it all – meeting with legislators, training parents, creating a website and now drumming up support for the FASD Respect Act.

“Our voices must be heard,” she said. “There’s no way this is going to pass without grass-roots momentum.”

She hopes that the legislation will make life easier for people like her daughter, who came into this world three months early, weighing just over two pounds the equivalent of a quart of milk.

Hotelling adopted her at four months, from a Kirov, Russia orphanage. “They told me her birth mother didn’t smoke or drink and I just rolled my eyes,” she said, recalling the cigarette-and-vodka kiosks on almost every corner.

[pullquote align=”left or right”]“If everyone would take five minutes…and call your two senators and Congressional representative. Tell them to support Senate bill 2238 or House bill 4151.”[/pullquote]Like any other medical condition, early detection is crucial – but even with a  Ph.D in psychology, Hotelling found herself without a road map. When Sasha didn’t hit key developmental milestones, the new Mom shifted into researcher mode, but U.S. clinicians weren’t much better at providing information than the Russians. (One pediatrician pronounced the toddler as “fine” and that all his premies catch up by age 3.)

With each passing year, the learning and behavioral gaps between Sasha and her peers only grew wider. Finally, her daughter was properly diagnosed at Children’s Research Triangle in Chicago. Sasha was 10. Three years later, entering the turbulent teen years, Hotelling quit her career to be a full-time parent.

She immersed herself in learning about the impact of exposure to alcohol in utero, participating in the annual International FASD Vancouver conference and every online course and webinar she could find. Eventually, other parents started reaching out to her as an expert source and in 2018, she started the non-profit NCFASD Informed.

“People may know the name FASD, but they have no idea what our day-to-day lives are like.”

One example from Hotelling’s own life: At 13, Sasha took a check from Mom’s checkbook to purchase and board a horse. Luckily, the check was scrawled in pencil, halting the transaction.

Now, at 27 and with a 71-year-old Mom, the issues are more serious. Where will Sasha live? (She’s already been in several facilities that didn’t fit her needs or nurture her talents.) How will she manage finances? And, most important, who will advocate for her once Hotelling is gone?

“If everyone would take five minutes after you’re finished reading and call your two senators and Congressional representative. Tell them to support Senate bill 2238 or House bill 4151.  This legislation will be life-saving for families like mine.”

Do you have a story to tell Congress about how FASD has impacted your family? Go to nofaspolicycenter.org and contact Jenn Wisdahl, policy coordinator.  She can provide any materials you need, including how to set up a meeting with your legislator.

Bonnie Miller Rubin is a writer, editor, speaker, and strategist who provides and curates content for a variety of platforms. She is a regular contributor to the Wall Street Journal. As a Chicago Tribune reporter for 25 years she specialized in health and family issues, covering stories on marginalized populations, including FASD.