A Safe Place for Dylan

COLUMBIA FALLS — It takes Brad Nieves a little longer than one might expect to answer the door at his unassuming residence in this modest neighborhood, enough lag time to make it seem like perhaps the doorbell didn’t actually ring.

When he opens the door, Brad, 38, is all apologies. He’s sorry it took so long, but he had to get the keys from the biometric safe, which he opens with a fingerprint, in the hall closet, where they’re kept to make sure the house is locked up like a vault from the inside.

The house is clean and orderly, though Brad is still apologizing for the state of it; a shared space for a man and three boys, it’s hard to keep it as pristine as he’d like. The kitchen, his natural domain, is like most built in the last couple of decades, though a few irregularities stick out: locks on all the cupboards, a padlock on the refrigerator.

Brad looks around the kitchen and rubs his large hands over his bald head, down his face, over his beard.

“The thing with autism is it’s so different for every kid,” he says.

Downstairs, his 16-year-old son Dylan, who is on the severe end of the autism spectrum, is sitting in his room. Brad knows it; he just saw him. Still, he reflexively checks for his keys, just to be sure Dylan hasn’t managed to elope — a word meaning escape, and one that has kept Brad from sleeping soundly for 10 years.

In the nightmare, Brad sees Dylan escape from the house as he’s done so many times before, early in the morning, between 4 a.m. and 6 a.m. At 16, Dylan is big, standing 5’10” and weighing 180 pounds.

Dylan is happy when he finds a way out of the house. It’s a puzzle to him; after he walks into a room, he has cased every tool and every possible escape plan within 30 seconds. Slipping a key off the ring or punching out a window screen, he finds himself free and wandering the streets of Columbia Falls.

Most times, Dylan is searching for his favorite things: food, Disney movies, electronics he almost certainly already has at home. Finding a house that suits him, Dylan pulls an air conditioning unit out of a stranger’s window, letting himself in, where he rummages through the kitchen or maybe just uses the bathroom.

But in the nightmare, Dylan, who is non-verbal as part of his autism disorder, makes a noise and wakes the homeowner, who stumbles out to see a teenager the size of a grown man in their home, early in the morning. The homeowner asks what he’s doing there, and Dylan does not — cannot — respond; he neither understands nor knows it’s dangerous.

“This innocent child, every time he goes into somebody’s house, my heart almost stops,” Brad says.

In the nightmare, the homeowner takes security into their own hands. Dylan is no longer a son or a teenager — he’s a threat, and the homeowner is terrified and armed.

“He’ll take a whole bottle of ketchup and drink it,” Brad says, shaking his head.

As a chef at the Night Owl who works from 3 a.m. to 3 p.m. to maximize his time with his boys, Brad prepares intricately plated meals for himself, his 5-year-old son Lucas and Bradly, Dylan’s twin and older brother by 12 minutes. Seared steaks, roasted asparagus, risotto — the plates are beautiful.

Dylan gets his own meals, usually simple affairs. He likes to eat anything unhealthy, Brad says, but would eat toast for every meal if you let him.

“I’ll lock that fridge 1,000 times in a row, but the one time I don’t …” Brad trails off, the implication clear.

Dylan is able, at a glance, to tell when the locks aren’t engaged. Brad calls it a sixth sense. Dylan is smart, and his problem-solving abilities are off the charts.

But from the outside, Dylan seems like a toddler in a nearly adult man’s body, and in many respects he is. He tears up his room every day, is soothed by Disney movies, refuses to take medicine, has no problem urinating or defecating on himself or something else that isn’t the toilet and moving on to his next puzzle.

His non-verbal trait is also particularly vexing when it comes to the outside world. His family can tell, usually by body language, what Dylan wants or seeks, but it wouldn’t be immediately clear to a stranger.

About two years ago, the family finally went to the state about Dylan. They’ve had to screw the downstairs windows shut to prevent escape, they’ve barred the woodstove, they’ve deadlocked the doors from the inside, and they’ve installed alarms on both doors. It’s to keep Dylan safe, but it puts everyone else inside the house at risk, especially if there’s a fire.

Brad keeps a baseball bat upstairs in case of flames, so he can bust out the windows. He’s instructed Bradly Jr. to do the same with weightlifting equipment.

“They’re beside themselves,” says Matthew Wacker, Dylan’s case manager at the Child Development Center in Kalispell. “He is their child and they’ve been bending over backwards to do right by him. But it’s been almost two years now that they’ve tried to say, ‘We can’t do it anymore, we are beyond our limits, we can’t keep him safe.’”

Dylan has an 0208 Medicaid Waiver from the state, which provides tens of thousands of dollars a year for coverage after it was determined that he had “intensive needs.”

Ideally, the family would like to place him in a secure facility like a group home, where he would have 24-hour supervision. He’s been on a waiting list for such a placement going on three years, but for various reasons, including Dylan’s non-verbal and elopement issues, he’s been overlooked for openings.

There’s nowhere to spend the money.

“We can never use it,” Brad says. “He has nobody who is willing to work with him.”

Brad once got so desperate that he tried to drop off Dylan at the local Child and Family Services office.

“I got to the point where I just couldn’t do it anymore,” Brad said. “We took him to (CFS) and said, ‘You deal with him.’ They told us we had to take him home.”

Brad pauses his story, running his hands over his face again. Dylan needs 24-hour supervision, and when he’s not in his special education classes at Columbia Falls High School, he’s at home. That means Brad’s at home immediately after work until he leaves for it again at about 2:30 a.m. The boys go over to his ex-wife Jessica’s house at night, and she takes them to school.

“If my ex wasn’t helping me, I don’t know what I would do,” he says. “I’d lose everything.”

Aides help, but so many of those positions are vacant as the state continues to grapple with budgeting issues. Brad said they had help over the summer when college students were taking the jobs, but once the season ended, so did the assistance. The state is currently wrangling with the challenge of making deeper cuts to the state Department of Public Health and Human Services, with $105 million in proposed funding decreases, including in senior and long-term care, child protection services and addictive and mental disorder programs.

Martin Blair, executive director at the Rural Institute for Inclusive Communities at the University of Montana, said the Nieves family’s situation is severe, but not uncommon.

“I know that every developmental disability provider, even in urban areas, is desperate for staff,” Blair said. “The state has a serious revenue problem.”

In order to pay workers more and fill empty positions, the providers need more compensation, Blair said. But the current budget discussions call for reductions in the Medicaid provider reimbursement rate, which adds another stumbling block.

“These desperate situations are going to continue to get worse,” Blair said.

And while the state works on its finances, life continues for the Nieves family.

“When these things are happening, there’s just nowhere to turn,” Blair said. “This is way beyond what untrained people can deal with.”

Brad understands his own limitations as a caretaker for a child with very specific and intense needs, and he wants nothing more than to overcome them, somehow.

“If Dylan had 24-hour care and attention and work, I think he would thrive,” Brad says. “Whereas I only have a couple hours a day.”

In the dream, Alicia Nieves sees her son in a group home with around-the-clock supervision, somewhere he could wake up at 4 a.m. if he wants and a trained professional would be there to assist him, to follow him.

Ideally, this home is somewhere in the Flathead Valley, but that’s where the dream ends. Alicia, 34, knows that’s not a possibility yet; there isn’t a group home for teens with autism and non-verbal characteristics and elopement issues here.

It was easier when the boys were smaller, Alicia says, because she could still control Dylan. Currently living in Kalispell with friends while she looks for something more permanent, her son can’t stay with her. It’s not safe.

“I can’t take him to the park. I can’t take him anywhere without some other person with me because if he runs away and decides he’s going to keep going, he’s bigger than me,” Alicia says.

When the twins were babies, Alicia noticed the differences. Brad was away, in jail on charges stemming from a methamphetamine addiction he has since kicked, and even he could see it when they visited.

Bradly Jr. took off developmentally at about 18 months old, while Dylan remained frozen, sometimes even taking steps backward. Doctor appointments led to the Child Development Center, where the autism diagnosis came when the twins were 2.

She moved them to Missoula for a while to see if the services were better, but eventually came back to the Flathead. The first time Dylan eloped is burned into her brain: The boys were 3, they didn’t get far, and it seemed to be a team effort between them.

But Dylan was the ringleader.

“Dylan is such an intelligent boy,” she says.

The dream doesn’t last long before it morphs into the nightmare, the one she and Brad share though they haven’t been married for years. It’s still dark out, and Alicia can see her son happy as a grizzly in a huckleberry bush to have successfully escaped, to have outplayed everyone else in the game.

Will he look both ways before crossing the street? Probably not, she says. He’s also drawn to water — “he’s such a water baby,” Alicia says — but he can’t swim. He likes to wade in up to his chin and feel the floating sensation, and this valley is full of rivers.

Will he know the danger he faces as he approaches a house to break in somehow? No, Alicia says, he just knows it’s part of the fun.

“He doesn’t know about going into somebody’s house and what could happen,” Alicia says. “There’s the fear of somebody else rightfully trying to protect their family when he doesn’t answer them and he’s in the living room and it’s dark …”

She’s crying now talking about it, the nightmare seeping into her waking life.

“He’s just an awesome kid. I love him so much. He’s a good kid and there isn’t anything that we wouldn’t do for him,” Alicia says. “But we’re to the point where there’s nothing we can do for him except keep him as safe as we possibly can.”

Bradly Nieves Jr. is an upstanding student at Columbia Falls High School, big for a sophomore at 6’1” and 190 pounds. He plays JV and varsity football along with other sports and activities, and if he doesn’t skip any school assignments this year he’ll get to drive on his own. As it is now, Brad picks the boys up from school and uses the opportunity to go to the grocery store because Bradly can watch Dylan.

On offense, Bradly plays wide receiver. On defense, he’s a linebacker. He loves playing, especially when his family is there to watch him. His dad hasn’t made it to a lot of games — it’s almost impossible to take Dylan out to the grocery store, let alone a noisy football game.

Bradly is charming and hangs out with a big group of students at school. But only a few have been to his house.

“I only usually have a few select friends come over because they understand what (Dylan’s) like and they’re able to be fine with it,” Bradly says. “Whenever I have somebody come over and Dylan is in the house, I always give them a warning. He’s usually fine. They’re all completely understanding. They all know.”

Bradly is mature and responsible, something his parents attribute to him taking on an outsized role in his family, bearing some of the weight of caring for his brother.

“I look after him quite often, in the summertime especially,” Bradly says. “Whenever my dad goes to work, I watch him and my little 5-year-old brother. That’s also the same situation when I’m at my mother’s.”

He gets nervous going to his mom’s house, because he knows his mom and grandmother aren’t big enough to control his twin. Being his brother’s keeper feels natural, but the stress of Dylan eloping is also real.

“Who knows what could happen? Somebody could get really mad at him or try to attack him or something. We always get worried, me especially. Sometimes I watch my brother and sometimes he just gets out,” Bradly says. “I always feel like a terrible person because I didn’t watch him fully.”

In Bradly’s dream, Dylan could live in a facility with protection and security and support, where he could watch Disney but also have people who know how to calm him down when he doesn’t get what he wants, and know how to handle him if he feels defiant.

“In a way, him living in a group home would be for the better in terms of our family — we’d get more freedom and stuff — but we don’t want him out of our lives because obviously he’s my brother, he’s family,” Bradly says.

Part of that dream is having his dad at his games, and the school has helped make that a reality. His dad got permission to park in the end zone, where he can watch Bradly play while keeping Dylan happy and contained.

“I really appreciate that because I want my dad to be at my games. He’s missed a lot in his life,” Bradly says, not unkindly. “It’s rough. I love when my dad’s there watching me compete. It keeps me more energized than ever. Having any family there is just awesome.”

It happened over the weekend of Sept. 16.

Dylan went into his 5-year-old brother’s room with a 10-inch butcher knife, intent on leaving through the window. When escape was secured, he dropped the knife in the child’s room.

Successfully out of the house once again, Dylan broke into a nearby trailer.

Though he no longer had the knife, Dylan was obstinate and wouldn’t leave the residence, not even when the police arrived. He finally calmed down enough to leave when handcuffed, and the police released him to his family once outside.

But if it happens again, Dylan might be headed to the emergency room and then Pathways Treatment Center, in an attempt to keep him secure. The family is running out of options, their CDC case manager said.

Dylan survived this incident, just as he’s survived this long with his family watching over him. But they can’t be there every second, and every second is one in which Dylan gets older, stronger, and further from their influence.

The nightmares edge closer to waking life, and the Nieves family members continue to do what they always have: the best they can.