FASD advocate returns from 4,300-mile cross-country research trip

‘Everyone feels isolated’

Posted 8/4/21

PITTSBORO — An adventurous spirit — a cyclist, runner, backpacker and self-proclaimed explorer — 19-year-old Pittsboro resident and UNC-Chapel Hill student Emmaus Holder has long dreamt of …

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FASD advocate returns from 4,300-mile cross-country research trip

‘Everyone feels isolated’

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Posted

PITTSBORO — An adventurous spirit — a cyclist, runner, backpacker and self-proclaimed explorer — 19-year-old Pittsboro resident and UNC-Chapel Hill student Emmaus Holder has long dreamt of packing a bag, throwing it on the rear of his bike and taking a tour across Europe.

But as the COVID-19 pandemic closed borders, restricted international travel and forced lockdowns across the world, his hopes of an international bikepacking trip would have to wait.

Instead, he used this summer as a way to not only scratch his intrepid itch, but conduct important research and inspire change along the way.

“So I thought, ‘Why not do a domestic trip?” Holder told the News + Record a couple of days after returning home from Los Angeles last week. “When I was thinking about all of the really cool things that you can learn from America just from traveling across the U.S., I realized I also wanted to put some purpose behind the trip.”

Holder has two adopted brothers, aged 13 and 14, who have been diagnosed with a fetal alcohol spectrum disorder (FASD), a selection of disorders that are caused by a baby’s exposure to alcohol in utero.

Since the adoption — and diagnosis — of his brothers, he’s become more passionate about FASDs, striving to learn more about them and increase public awareness of the issue, which affects a staggering 1 in 20 children in the U.S.

So, he turned it into a research trip.

Two months before he was set to leave, Holder began networking with organizations across the country that provide resources to those with FASDs, such as the National Organization on Fetal Alcohol Syndrome and Proof Alliance.

His goal? To find people in cities around the U.S. that would be willing to share their own stories about FASD as part of his research.

“(I wanted) to find people who would be willing to talk to me about their experiences with both the physical and emotional challenges of FASD,” Holder said, “and with the challenges of a broken system that doesn’t know how to take care of those people.”

Based on his networking and planning, he created a 4,300-mile long route from Topsail Beach on North Carolina’s coast to Los Angeles with nearly two dozen points plotted along the way — many of which made the route less linear — which represented people he’d stop to interview.

He also added a fundraising component to his trip, starting a GoFundMe page to benefit NCFASD Informed, a Chapel Hill-based non-profit group that aims to foster “a world where individuals with FASD can thrive,” according to its website, primarily through education.

With the campaign, Holder raised more than $4,500 for the organization through 76 separate donations throughout his trip.

And on May 20 — strapped with a $6,000 Morehead-Cain scholarship grant to supplement his research, camping supplies and his bike — Holder left Topsail Beach and embarked on a journey that would take nearly two months to complete.

Though you may not be familiar with the name, FASDs are extremely common in the United States.

A 2020 report published in the American Journal of Preventive Medicine detailed a 2018 study that found that 11.3% of pregnant women aged 18-44 admitted to having at least one drink of an alcoholic beverage in the last 30 days.

Because of those statistics, it’s estimated that FASDs affect 5% of all children in the U.S., according to studies by Philip May and other FASD researchers. For those in the foster care system, the number of children exposed to alcohol in utero jumps to around 60%, said Kathy Hotelling, board chairperson for NCFASD Informed.

However, there’s a chance it could be even higher. It all comes down to individual diagnoses.

“It’s extremely underdiagnosed, so it’s likely that number is much bigger,” Holder said. “We can’t actually say for sure how different, but even within the known communities, only 15% show facial features and other physical features. Having heard an experience that people won’t give the same kind of diagnosis to those without physical components, it’s honestly kind of ridiculous.”

With FASDs being spectrum disorders, there are lots of ways people can be affected.

It’s not a one-size-fits-all condition.

Some people with FASDs show physical features — such as a smooth ridge between the nose and upper lip — and many others don’t. Those with FASDs can have speech delays, learning disabilities, vision/hearing problems, behavioral issues, attention/memory difficulties, poor coordination and a plethora of other effects that can vary depending on how much alcohol was ingested by the mother and in what period of the pregnancy the drinking occurred.

But due to a lack of education and awareness about FASDs, even among physicians, getting officially diagnosed can be a painstakingly difficult process if one is a member of the 85-90% who don’t show physical signs.

“I moved (to N.C.) from Illinois 15 years ago and it took me 10 1/2 years to get my daughter diagnosed,” Hotelling said, referring to her 27-year-old daughter that she adopted at 4 months old in Russia, who has an FASD. “My daughter passes, as I call it, for neurotypical, which is a problem in itself because people expect her to be able to do things she can’t do.”

Hotelling said her daughter, who doesn’t exhibit physical features related to FASDs, had seizures until she was 8 years old — not atypical for those with an FASD — and other various problems. She’d been to a cardiologist, four neurologists, a gastroenterologist, a developmental pediatrician and taken part in physical therapy, speech therapy and occupational therapy programs. But none of them could quite tell her what was wrong.

That is, until a clinic in Chicago gave her daughter an FASD diagnosis, which is what Hotelling had suspected for years.

The diagnosis allowed her daughter to apply for support services through Medicaid, which Hotelling recommends all newly diagnosed families do immediately because there’s a chance you could be waiting for up to a decade.

In North Carolina, there’s something called the N.C. Innovations Waiver that is “designed to meet the needs of Individuals with Intellectual or Development Disabilities (I/DD) who prefer to get long-term care services and support in their home or community,” according to the N.C. Dept. of Health and Human Services’ website. An official diagnosis is required to apply.

It essentially allows those diagnosed with an intellectual or developmental disability, like an FASD, to receive a wide range of in-home care and other support options, rather than being institutionalized. But its waitlist, titled the Registry of Unmet Need, is unfathomably lengthy.

“Even if a person believes that their child will not need support services, I recommend they get on it,” Hotelling said. “If you’ve got 13,000 that have it and 14,000 that are waiting — the legislature is the one that says how many (slots) are available per year, and it’s often about 100 per year, which doesn’t make much of a dent, but this year it’s about 600 — that’s still not a very large portion of those that are waiting.”

Holder’s brothers had a much easier time getting diagnosed, since one of them exhibits facial features evident of an FASD, and their biological mother has also admitted to alcohol use while pregnant.

Though, their journey — which has seen them go in-and-out of medical institutions due to behavioral issues — has been far from easy, a common thread among many people diagnosed with FASD.

“(All of this) shows how our medical system and how the institutions and organizations that take care of people with disabilities have completely disregarded this invisible disability,” Holder said. “Everyone feels isolated.”

‘This is amazing, this is ridiculous’

While most cyclists making cross-country trips tend to follow one of the few well-known coast-to-coast routes — such as the TransAmerica Bike Route from Astoria, Oregon, to Yorktown, Virginia — Holder’s adventure took a different path.

He based his route primarily on the people he was interviewing, which took him from North Carolina to Tennessee, to Kentucky, to Indiana, to Ohio, back to Indiana, to Illinois, to Iowa, to Nebraska, to Colorado, to Utah, to Arizona and then, finally, to California, where he crossed the finish line.

On a normal day, Holder would wake up around 5 or 6 a.m. and spend an hour getting ready and putting everything — food, water, toiletries, repair kits, medkits, clothes, electronics — on his bike.

He’d typically ride for two or three hours before stopping for food and water — one of his four major meals of the day, which was a necessity, given the amount of energy he exerted by riding each day.

“I had about a 6,000-calorie diet, so that was fun, because I had to burn so many calories,” Holder said with a laugh. “I had snacks on the bike, as well. I’d carry a good amount of food. I didn’t have the healthiest diet, but calories are calories.”

On average, he’d ride about 40 to 50 miles before lunch, then another 50 or 60 in the afternoon. Aside from his time crossing over the Rockies, which slowed him down because of the huge elevation gains, he averaged around 115 miles per day.

Holder estimates that he slept in his tent about 35% of the time, spending the other 65% staying in the homes of either his interviewees or hosts he found via Warmshowers, an app for discovering places to sleep while on road trips.

On occasion, he’d opt for a hotel room or an Airbnb.

In total, he rode his bike on 47 of the trip’s 56 days, nine of which were used to focus on interviews and give his legs a breather.

While he never had any days where he flat-out didn’t feel like riding, he did have moments where pain and exhaustion caught up to him. The Fourth of July was particularly bad.

He was coming through Grand Staircase-Escalante National Monument in Kanab, Utah. His legs were “destroyed,” he recalls, and he ended up breaking down at a gas station. He stopped for the night, only going 87 of the 120 miles he planned to ride that day.

“My head just did not want to keep going,” Holder said. “But then, the day afterward, I had one of the best days of the whole trip. My legs felt absolutely amazing. I ended up camping under the stars. It was amazing.”

This was just one example of his journey’s many ups and downs.

Some days, Holder’s bike broke in outrageous ways — including a crank bolt (a small part attached to the pedal) that snapped in half, along with an entirely broken right pedal — or he’d have to deal with forest fires, rock blastings, torrential downpours, unbearable heat or seemingly insurmountable obstacles.

He even traveled through the Mojave Desert at the same time that the historic heatwave washed over the Western U.S. in late June/early July.

“It was pretty ridiculous, I did not sleep very well in that,” Holder said, chuckling. “I ended up waking up at 4 a.m. every day for the three days that I was in the Mojave, riding until noon, then sitting in a gas station or something for like six hours while it was 120 degrees outside, then riding from 6:30ish when the sun set to around 11 p.m.”

However, he said that despite the less-than-ideal points of his trip, the highs undoubtedly outweighed the lows. He documented all of it on his Instagram page, @emmaus_holder, writing out the best and worst parts of every day through posts and stories.

“I think having that moment of reflection, recapping all of these amazing things that I saw during the day, it’s like, ‘Oh, man, this is amazing, this is ridiculous. It’s so cool and I’m actually doing it,’” Holder said. “It’s like, man, how can I feel ungrateful or have doubts about this when I get to see all this amazing stuff?”

He experienced some of the country’s greatest natural wonders, including a night of camping at the Grand Canyon and a picture-perfect mountain top view after a tough climb in the Appalachians.

He met some of the kindest strangers, too, one of which gave him a gallon of water to fuel him on his trek and another, a bike shop owner, who grabbed a crank bolt from his personal collection to help fix Holder’s bike in Iowa.

And, above all else, the trip allowed him to raise awareness about FASD, gain the perspective of other families who have been affected and conduct empirical, sociological research, something he said he hopes to do more of.

“I think on top of learning about how difficult FASD is, you see how amazing and kind people are, so it’s kind of this dichotomy of what our country is,” Holder said. “It’s this blindness in that we don’t know what’s happening here and it’s kind of difficult to deal with, but then there’s also this overwhelming kindness. It’s something that needs to be rectified.”

‘I’m kind of flooded with emotions’

Holder, less than a week after returning from his trip, has already started to analyze and transcribe the interviews and research he’s gathered over the last couple of months.

While there isn’t a set plan for what he wants to do with his research, he has hopes that he’ll be able to consolidate everything he’s learned into a research paper — or master’s/doctoral thesis — for school, a peer-reviewed article or two that’ll be published in academic journals and, if possible, a book down the road.

He plans to do additional research on the subject in the future — this trip was just the beginning.

His work will be multi-layered, with him taking a journalistic approach to his trip, recalling snippets of stories he heard from his interviews and documenting his family’s struggles with FASD, but also taking a critical academic approach to fixing the broken systems that are in charge of taking care of those with FASD.

“A lot of the major problems that our country is dealing with right now and the world is dealing with right now is educating people,” Holder said. “So the intent is to get it published in as many places as possible, get as much exposure as possible and educate people in the right way.”

Education is one of the many aspects of a bipartisan bill recently introduced in Congress entitled the FASD Respect Act, which, if passed, would create an FASD Task Force, expand support options for those diagnosed with FASDs and prioritize teaching schools and foster parents correct ways to aid children with FASDs.

Hotelling and many other FASD advocates around the country are working to boost support for the bill, while Holder said there have been talks about him possibly speaking in front of Congress to talk about the bill’s significance, but nothing’s set in stone just yet.

This bill, along with work being done by Holder, Hotelling and other FASD researchers has the potential to create change in the stigmatization and ignorance surrounding both alcoholism and FASDs, Holder said.

At least, that’s the goal.

“I’m very grateful for the fact that I had this opportunity … because it’s an all-encompassing adventure that’s very life-changing and shaped a lot of who I am and what I want to be,” Holder said. “I’m hopeful of the capacity for change that it has in the sense that it’s an area that so few people know about. … There’s a lot of tension and anxiety as to whether or not my research will actually make a difference, but I think it certainly will in many ways. It’s just been amazing for my development in advocating for the FASD community. I’m kind of flooded with emotions.”

Reporter Victor Hensley can be reached at vhensley@chathamnr.com or on Twitter at @Frezeal33.

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