Adults with fetal alcohol syndrome face huge challenges

Billy and Joe
Billy Nelson, left, and Joe Schaffer are among eight young men with fetal alcohol syndrome who live at Westbrook farm west of Duluth. The home specializes in teaching adults with fetal alcohol brain damage to live more independently.
MPR Photo/Tom Robertson

There are very few places in the country that specialize in residential care for adults with fetal alcohol brain damage. That's what makes Westbrook farm west of Duluth so unique.

It's a gorgeous setting -- 160 acres of rolling pastures and thick forests near the St. Louis River. The farm is home to eight young men struggling with the lasting effects of prenatal alcohol exposure.

WITHOUT THE FARM, HE'D BE IN PRISON

Two brown and white miniature horses nibble hay in the barn. Billy Nelson, 20, gently scratches their ears. Nelson considers the horses his friends -- and his therapy.

"This one's Drummer and that one's Chance," says Nelson. "You can take them out in the yard and run with them, and they stay by your side. They're really nice horses."

Billy Nelson
Much of Billy Nelson's childhood was spent in foster homes and treatment centers. Nelson says the structured environment and peaceful setting at Westbrook have allowed him to focus on getting his life in order.
MPR Photo/Tom Robertson

Nelson has lived at Westbrook for about two years, but it was a rough road getting here. His mom was a drinker. He and his twin brother were born in St. Paul three and a half months premature. His brother died just a few weeks after birth.

Nelson was placed in a series of foster homes, treatment centers and psychiatric care facilities. He was into drugs and alcohol, and was prone to violence. Nelson figures if he hadn't ended up at this farm, he'd probably be in prison.

"I used to be crazy and all that when I first came here, but then I realized what my plan was to do on this earth before I pass on," says Nelson. "I need to take the punches and say, hey, just get my stuff together so I can move on in life and better myself. Because if you don't better yourself, you're not going nowhere."

Westbrook farm was started five years ago by a Duluth nonprofit organization called Residential Services, Inc. The goal is to teach basic living skills to adults affected by fetal alcohol exposure, and help them live independently.

It's a population that health advocates say is grossly underserved in this country. Studies show 90 percent have mental health problems, and 80 percent have trouble holding onto a job.

EACH DAY IS UNPREDICTABLE

Nelson and the others at Westbrook lack impulse control and have trouble understanding the consequences of their behaviors.

Travis Dombrovski, manager of Westbrook, says that means daily life on the farm is unpredictable and sometimes explosive.

"They break things, and they yell and they scream and they swear, and they're hyper-sexual," Dombrovski says. "Assaults, sure, phones being thrown, lots of property destruction. It's got to be a helpless feeling. It's got to be scary and it's got to be hard to understand."

Travis Dumbrovski
Travis Dombrovski is the manager of Westbrook farm, which is operated by Residential Services, Inc., a non-profit based in Duluth. The farm is one of the few places in the U.S. that focus on adults with fetal alcohol brain damage.
MPR Photo/Tom Robertson

Dombrovski says Westbrook's residents have trouble learning from their mistakes, so instead of punishment, they face what he calls "natural consequences." For example, when someone gets angry and breaks something, they're required to fix or replace it.

Despite evidence that punishment is ineffective on adults affected by fetal alcohol, some 60 percent of them will spend time behind bars. Dombrovski say society needs to take a different approach.

"They don't need to be in jail. Jail is not the right place," says Dombrovski. "Sure, there might be structure, but there's no learning, there's no help, there's no support. And it's a waste of a human life, in my opinion, to leave them in jail. They can come out. They can make it."

There's typically a long waiting list to get into Westbrook. Residents are usually referred there by county social service agencies, which pay the costs through foster care and other program funds.

The residents start out living in the main farmhouse, where life is highly structured. They're assigned daily chores. They learn how to cook and clean and take care of themselves. They tend to the farm animals and work in the garden.

Then, when they're ready, they can graduate to more independent living in an apartment building just across the yard.

Billy Nelson says he's ready to move into one of those apartments. For the first time in his life, he's set some goals for himself. He wants to earn his GED, and would someday like to study climatology. Nelson says Westbrook has given him a confidence he's never had before.

"Trust was a big issue when I first came here," says Nelson. "I didn't trust no one. Not even myself. Didn't believe in myself. But now I do believe in myself. And I know I can do whatever I want to, as long as I put my head to it."

NO SAFETY NET FOR ADULTS

Helping alcohol-exposed children grow into adults can be a nightmare for parents. Jodee Kulp lives in a western Twin Cities suburb, where she and her husband raised their adopted daughter, Liz, who's now 21 years old.

Kulp says people with more visible disabilities have clear safety nets, but for young adults with fetal alcohol syndrome, getting help can be a struggle.

The Kulp Family
The Kulp family find it a daily struggle to help 21-year-old Liz meet the challenges of adulthood. Pictured, left to right, are Liz, Jodee, Karl and Liz's boyfriend, Sam.
MPR Photo/Tom Robertson

"The rule is, fail first. And failing first is very painful," says Kulp. "It's very painful as a parent to watch your child fail. It's very painful to watch your child fail over and over and over again."

Like many people with fetal alcohol brain damage, Liz has trouble managing her money. She's gone into treatment twice for alcohol abuse. Liz says when she first moved out on her own at age 18, one of her biggest problems was housing. She says people took advantage of her.

"I had basically a party house where friends wouldn't leave," Liz says. "By me just inviting maybe one person, they invite whoever else. But they wouldn't leave and then I didn't know what to do, and eventually got kicked out of a lot of apartments."

In all, Liz was booted from nine apartments in just two years. Her mother says Liz tried to do the right thing, but just wasn't capable.

Jodee Kulp
Jodee Kulp and her husband struggle to help their 21-year-old daughter, Liz, transition to adulthood. Liz is disabled by fetal alcohol syndrome.
MPR Photo/Tom Robertson

"For a long time, I felt like I was swimming in the sharks, running around from place to place trying to save her and help her, and try to teach her and help her learn," says Jodee Kulp. "And then finally you look at the situation and say, you know what, in order for her to get services, I've just got to let her fail. And then you just go on your knees, because that's the only option you've got is to just let it happen."

Kulp's daughter eventually qualified for disability services. Liz gets financial help with her rent. The county provides Liz with a job coach to help her find work. She's managed to keep the same apartment for almost a year.

Liz says she still struggles just to contain her emotions. She says little things will irritate her and she can feel the anger welling up in her body. Sometimes it turns into a meltdown, and Liz says things she doesn't mean.

"I can get out of hand. I've calmed down a little bit, but I tend to break things," says Liz. "And people all turn their head and I get frustrated and I yell at them all, because I don't like it when people stare me down. It frustrates me, because they look at me like I'm crazy or something. It's just that I'm frustrated and I don't know how to maintain, and I'm just like, breaking out of my own skin."

"I look at [fetal alcohol syndrome] as a wicked fountain of youth. Nobody acts the age that they appear to be. You are forever a child."

Jodee Kulp quit her job years ago to devote her life to helping Liz succeed. She helped Liz write a book about what it's like to live with fetal alcohol damage. Liz is now working on a second book focusing on the challenges of making the transition to adult life. Jodee and Liz work together to raise awareness of the disorder.

"The first thing we need to do is we need to change our frame of reference, which is realizing they have a brain injury," says Jodee Kulp. "Once we understand that we're dealing with a brain injury, we start working with the population in a different way... The idea is to build a national voice for persons with fetal alcohol."

What's most difficult for Liz's dad, Karl Kulp, is to not blame Liz for her bad behavior. Karl says he still has to remind himself that Liz can't help it because her brain is damaged.

Karl says the future is too far ahead to even consider that Liz could someday become a productive adult.

"We're immensely gratified that Liz is alive at 21," Karl says. "There were so many ways, and there have been so many instances along the way, where it could have gone the other way and she may not have survived. And it isn't clear yet whether she's going to make 22. She just doesn't have the brain function to guide herself in the right way all the time. So she makes a lot more mistakes."

MAKING IT WORK -- WITH HELP FROM OTHERS

Some adults with fetal alcohol damage are doing their best to lead productive lives. Monica Adams is assistant manager of a women's clothing store in a Twin Cities suburb.

"Is there anything I can get for anyone?" says Adams to several customers. "Just looking? OK. If you have any questions, don't hesitate to ask."

Monica at work
Monica Adams, 37, has struggled with fetal alcohol problems all her life. She's now an assistant manager of a women's clothing store in a Twin Cities suburb.
MPR Photo/Tom Robertson

Adams, 37, has gone through two failed marriages. Now she's moved back in with her adoptive parents.

Adams says she struggled all her life to fit in and understand the world around her. She sucked her thumb habitually until fifth grade. She had no concept of money or time, and school was always frustrating.

"A lot of things I just flat out didn't understand," says Adams. "I mean, a teacher would be talking and I'm like, what in the world is coming out of her mouth? Everybody else seemed to know. I was always the 'day late' person, always asking the person next to me. I feel like I got more of an education adopting to my surroundings than I ever did learning the ABCs, because I had to."

Adams says she's learned to adapt to her disability with strong support from family, friends and an employer who's willing to put up with her faults.

Her boss, store manager Mary Harrell, says she knew a little about fetal alcohol syndrome before Adams told her she had it. Harrell says she and the other store employees are willing to work around Adam's sometimes inconsistent behavior.

Monica and her boss
Monica Adams is pictured at work with her boss, Mary Harrell. Adams says Harrell's patience has allowed her to succeed at her job.
MPR Photo/Tom Robertson

"Probably the area that I see it the most is the disorganization part of it. We just all work with it," says Harrell. "If we have to clean up after her or, you know, pick things up or rearrange things, I'm willing to sacrifice that, because she's just an incredibly talented, creative person and is great with customers. I guess in any job you're going to have people that do certain things better than others."

Adams says she has a short fuse and works hard to keep her emotions in check. One of her biggest challenges is managing money, and trouble with short-term memory makes that even tougher.

Sometimes she forgets to pay bills, though she's gotten better. She says she's lost track of how many times she's had her driver's license suspended for forgetting to pay insurance or renew her license tabs.

"I mean seriously, if I were to rack up collective damages from fines -- I'm talking everything from legal system fines to credit card debts to cell phone bills, long distance bills -- I'm talking well over $10,000," says Adams.

A 'WICKED FOUNTAIN OF YOUTH'

Adams has become an advocate for others with fetal alcohol brain damage. She's on an advisory board for the Minnesota Organization on Fetal Alcohol Syndrome, and speaks to other young women who are struggling to become adults.

Adams says she used to wonder what she might have become had her biological mother not drunk alcohol while she was pregnant. Now, she just focuses on keeping her life together, and accepting the times when that's not possible.

"People say, 'Oh, you seem so normal. You don't act like you have it,'" says Adams, "and then the next month, I can do something that seems so hare-brained stupid, you can't believe I'm capable of doing that."

Health advocates say that, emotionally, people with fetal alcohol damage often function at half their age. Adams says that's true for her. She says she's figured out how to function as an adult, but she knows that part of her will always be a vulnerable little girl.

"I look at it as kind of a wicked fountain of youth," she says. "Nobody ever looks the age that they appear to be. Nobody acts the age that they appear to be. You are forever a child."

For now, Monica's answer is living at home with her folks. But that doesn't work for everyone.

Your support matters.

You make MPR News possible. Individual donations are behind the clarity in coverage from our reporters across the state, stories that connect us, and conversations that provide perspectives. Help ensure MPR remains a resource that brings Minnesotans together.