Violently Ill: Arizona Families with Dangerous Kids Have Few Places to Turn for Help
Courtesy of Sandra Enriquez
Matt Bourne spent his spring break knocking over furniture. One day, he broke a dresser in his sister's room and pulled down a flat-screen television. He punched himself in the face, hit his older sister, and hit his mom.
The family dealt with it as they normally did, taking turns cornering the 10-year-old in a back bedroom in their home in Cornville, about a 90-minute drive north of metro Phoenix. When someone had to use the bathroom, another family member would step in to take a turn.
It was the longest violent rage Matt had ever had, lasting for seven hours.
No one could ask Matt what was wrong, because he doesn't speak.
Arizona Cardinals Game Zone - 9/25 - Not A Game Ticket
TicketsMon., Sep. 25, 2:15pm
Arizona Cardinals vs. Dallas Cowboys
TicketsMon., Sep. 25, 5:30pm
Arizona Diamondbacks vs. San Francisco Giants
TicketsMon., Sep. 25, 6:40pm
WWE Smackdown Live
TicketsTue., Sep. 26, 4:45pm
Arizona Cardinals Game Zone - 10/1 - NOT A GAME TICKET
TicketsSun., Oct. 1, 9:50am
Matt is a cute boy with brown hair and eyes, olive skin, and a big, toothy smile. "The only mild thing about him is his appearance," says his mom, Sandra Enriquez.
Enriquez, 39, is a pretty woman with long brown hair, pale skin, and green eyes. She works as a surgical technician and Matt is the youngest of her four kids. Her smile is big like Matt's, but she seems tired as she tells her story at a McDonald's on State Route 260 in Cottonwood -- a five-lane road that Matt ran across, unaccompanied, earlier this year.
Matt had been having extreme episodes since late fall 2013, Enriquez says, but never one that lasted as long as the one that spring day, when he screamed without a pause beginning when he woke up and lasting through dinnertime.
As usual, the family -- which includes Enriquez, her three daughters, husband, and two stepsons -- didn't know what caused the outburst.
Finally, Matt wore himself out. He fell asleep on the couch.
Matt was diagnosed with autism just before his second birthday. He'd received therapies and medication to treat his increasingly violent behavior, but nothing worked. By spring of this year, Matt could projectile vomit on a dime. He would dump out the contents of the entire refrigerator. He would rip out his own loose teeth.
The task of helping kids like Matt is a complicated one. Children who exhibit such violent behaviors may do so as a result of many issues: mental illness, autism, other developmental disabilities, brain injuries, or a combination of these factors. But whatever the cause of the violence, these kids almost always struggle to remain in school, and it's rarely safe for them to live at home.
Help is available. Specialized in-patient treatment centers can work with violent kids, teaching them to control their behaviors in a safe environment with trained professionals.
But there is a catch. Not only do such facilities cost upwards of $10,000 a month, but there is no such facility in Arizona. So for families like Sandra Enriquez's, the decision to get a child the help he needs is an incredibly difficult one, one that means sending a child away from home.
And for most families, that can happen only if state agencies can be persuaded to cover the costs. Shortly after the seven-hour tantrum, Enriquez reluctantly began looking at residential facilities that could treat her son and for a way to pay for such treatment.
Even though Matt had been asked to leave two schools, even though he'd been found in the night in piles of shattered glass, and even though his family was living with locks on their doors and windows so he could not run from home, the state said no.
Enriquez and her attorney appealed the decision and eventually won, but there were more complications ahead. The only treatment facility with an open bed for Matt was on the other side of the country. Enriquez couldn't afford a plane ticket to visit the center, so she had to send her son sight unseen.
Matt had never been on a plane, and by the time the funding came together, it was clear he couldn't just hop on a passenger flight.
"We would literally have to sit on him when he went into a rage," Enriquez says. "There was no way in hell I was going to put him on a flight and jeopardize a plane full of people."
At five feet tall and 100 pounds, Matt was too small to sedate for the duration of a six-hour flight. Enriquez's attorney asked the state if it would assume liability if Matt caused a serious enough disturbance to bring down a passenger jet.
That did the trick. One morning in late June, Matt, his parents, two pilots, two EMTs, and a nurse boarded a Florida-bound flight out of Scottsdale. The private flight cost Arizona more than $150,000.
His mother hated to see him leave home, but she felt she had no choice.
"I have to give Matty a chance," Enriquez says. "He doesn't have a chance here."
Sandra Enriquez in front of pictures of her four children.
In the end, Matt Bourne's first plane ride was uneventful. The jet's staff had fruit bars, potato chips, and crackers for him. The nurse brought a portable DVD player to show him Frozen, and though Matt likes movies, he didn't watch it. Instead, he quietly looked out the window the entire flight. He never slept, and he was never sedated.
In Florida, a van took the family to the Devereux Viera complex, an hour east of Orlando, where Matt would now live. After an hours-long intake process, Matt's parents went to a hotel for the night, leaving their son alone for the first time in his life. They visited him the next morning to say goodbye.
About 40 percent of all individuals with intellectual and developmental disabilities display behaviors that require therapy, medication, or other interventions, says Dr. Louis Hagopian, program director of the Neurobehavioral Unit at the Kennedy Kreiger Institute in Maryland, an inpatient facility considered to be the gold standard of care for violent children with developmental disabilities.
But kids like Matt -- whose behaviors are highly resistant to treatment -- are rare, encompassing perhaps the top 10 percent of that group, he says.
Matt's actions fall into what Hagopian terms "severe problem behaviors." These can include self-injury, like head-banging, scratching, and biting; aggressive behavior like hitting and head-butting; pica, or eating inedible objects; and elopement, or running away.
The causes of these behaviors are unknown, Hagopian says, but there are certain factors that correlate with them, including communication deficits, sensory impairments, intellectual disability, and a diagnosis of autism.
Wendy Fournier, president of the National Autism Association, an advocacy group based in Rhode Island, says such behaviors are most common with nonverbal kids like Matt. "That behavior just comes from absolute frustration," she says. "Not being able to express what they need, what they want, how they feel, if they're in pain."
Mental illness can also play a part.
"There are times it can be strictly just environmental, or strictly just a mental health issue," says Dr. Bryan Davey, a Phoenix-based behavior specialist who works one-on-one with kids like Matt. "The fact of the matter is that for most of the cases we treat, it's a combination of both."
Jim Dunn, executive director of NAMI Arizona, a chapter of the National Alliance on Mental Illness, sees no point in drawing lines between developmental disabilities like autism and mental illnesses.
"If we looked at mental illness as a brain disorder 30 years ago, and addressed it as we have breast cancer or other diseases, we probably would have made strides by now," he says. "We try not to distinguish between mental illness and autism. Either way, it's a brain disorder."
No matter the cause, problem behaviors exhibited by kids like Matt are highly dangerous. It's no wonder many families make the difficult choice to send their children away for help. But facilities that offer interventions for these kids are few and far between.
For families across the nation, quality facilities may only exist several states away from home, Hagopian says. Arizona is one such state.
"The lack of available resources within our community is significant," says Charles "Chick" Arnold, an attorney who has worked on mental health issues in Arizona for decades.
Matt and his family aren't alone. Matt's attorney, Lori Bird, has a Phoenix client with a son with severe autism and violent behaviors. After the boy's parents struggled to get state funding for his treatment, he was placed in an out-of-state facility, where his behaviors finally improved. The facility recommended he go to a step-down center upon his release, but the state wouldn't pay for it. He returned home and immediately fell apart. He was hospitalized all spring.
And this issue isn't new. Daniel Martinez was a healthy 4-year-old when a police car struck him as he tried to cross a residential street in Gilbert. The traumatic brain injury he sustained resulted in a newfound violent streak in the boy. Daniel's family had savings and good insurance, but they spent years fighting to get him proper treatment locally before finally sending him to a facility out-of-state. He is now a functioning young adult.
Part of the problem is that residential treatment is very expensive. Davey estimates that facilities cost between $180,000 and $200,000 annually.
"The costs are astronomical," Arnold says. "Beyond what's affordable for families." Many families, like Matt's, petition an array of state agencies to co-fund placement in these facilities. Others turn to the court system in hopes that a judge will order that their child be placed in treatment and require the state to pay for it.
As such, it's possible only to get a general sense of the number of children affected by this issue. During the last reported quarter, October to December 2013, the Arizona Department of Health Services, which often plays a part in funding placements, paid for 35 children to be newly placed in residential treatment centers. The department serves some 46,000 children, so such cases are rare, encompassing less than 1 percent of their total service population.
But the previous three-quarters saw the department funding 32, 28, and 32 placements, adding up to 127 kids being newly placed in out-of-state facilities in the last documented year.
Add that to the number of kids placed through courts -- a figure that is not public record, a court spokeswoman says, though Arnold says he often employs courts to get families help -- and the total isn't insignificant.
Davey says no matter what the numbers, there is a huge need in Arizona for these kinds of services. "Not because it's 1,000 kids," he says. "But because the families who are impacted by this have no place else to go."
So why isn't there a residential treatment option in Arizona? The answer is complicated.
Historically, full-fledged institutionalization was the only choice for kids with these issues. The Arizona State Hospital, a state-run psychiatric institution, used to house a juvenile division, but that program closed as institutionalization grew less socially acceptable.
Steven Isham has been an Arizona educator for 40 years and a child and family advocate for almost as long. He says he was the first person to bring a conference on autism to the state, back in 1978. Isham says it's harder for families to get residential treatment for their kids now than it ever has been.
"There was a huge movement to end institutionalization," he says. "If you think with the glass half full, it was because kids should be in their homes. If the glass was half empty, it was because the state wanted to save money."
Liza Long is the Idaho mother of a violent, mentally ill son. In the aftermath of the Sandy Hook school shootings, her blog post, "I Am Adam Lanza's Mother," went viral. Long recently released a book, The Price of Silence: A Mom's Perspective on Mental Illness, about her experiences, which are often strikingly similar to those of Matt and his family.
"Certainly no one advocates a return to the days of institutionalization," Long writes. "But when the institutions closed, where did people with mental illness go? The promise of community-based resources to provide much-needed care proved illusory."
Quality residential facilities that offer treatment, not just warehousing, do exist. Just not in Arizona. So to get help for a child like Matt, a family who cannot afford the exorbitant costs associated with such facilities must turn to the state for help.
Some families use the court system, either relinquishing custody of their child or using an encounter with police to get their child before a judge.
Long cites a 1999 NAMI report on families with mentally ill children. One in four had been advised to relinquish custody of their child to the state, she writes, as a means of accessing mental healthcare.
Mary Lou Brncik, president of David's Hope Arizona, which seeks to steer the mentally ill away from the criminal justice system, thinks that involving the police in a loved one's care is a risky proposition.
"It used to be a different system, where a judge could do something that made sense," Brncick says. "Actually work out a plan."
But with mandatory sentencing laws and a lack of mental health courts for children, she questions whether a call to police is worth the risk.
Families can instead turn to the state agencies charged with dispensing services to kids like Matt. But Arizona's public health system is a complicated one, especially for children who fall into such complex, intersecting categories of disability.
The first place most families turn is the Department of Education, which is legally mandated to provide a free and appropriate education to all children. If a child isn't being appropriately educated by his or her school, the district -- with approval from the child's special education team -- can pay for a private placement. But private schools generally, and residential facilities especially, cost districts much more money. That, coupled with the fact that kids with severe disabilities generate more state funding for their districts, creates a financial incentive for districts to fight against placing kids in private settings.
At the very best, the Department of Education will cover only the educational portion of a treatment center's bill. The remaining costs are shifted to other state agencies.
Typically, those are the Department of Economic Security's Division of Developmental Disabilities, which serves kids with autism and intellectual disabilities, and the Department of Health Services' Division of Behavioral Health Services.
DHS is perhaps the most complicated piece in this puzzle. It is responsible for providing mental health treatment in Arizona, but it contracts out that responsibility to what are called Regional Behavioral Health Authorities, or RBHAs. These are privately held and nonprofit agencies trusted with handling DHS funds in exchange for dishing out DHS services.
"They get a finite amount of money, and they determine how they spend it," says Chick Arnold, the mental health attorney.
But simple math, he says, would suggest that the only way for RBHAs to fulfill their contractual obligations -- and still turn a profit -- is to reduce services.
Lori Bird, the attorney who has represented Matt and his mom in their fight to get help, says DHS and its contracting RBHAs make many of her clients jump through hoops to get funding.
"Behavioral Health is a giant stumbling block. Their function is to be almost a gatekeeper or clearinghouse," Bird says. "But in these cases, there's just no way to save money. It's an expensive proposition."
Arnold has been an opponent of the RBHA system since the 1980s, when he filed a class action lawsuit on behalf of hundreds of mentally ill Arizonans. "I was outraged at the idea of RBHAs," he says. "A provider in a public health system is very much different from a for-profit, privately held company. Those clash."
Arnold says he believes the delivery of mental health services "is a state responsibility, and the state should be doing it instead of what it does now, which is simply monitor the contracts."
Arnold's lawsuit, Arnold v. Sarn, finally settled this past year, and the lengthy litigation helped to shape the RBHA system as it presently exists, in many ways improved from early iterations.
But the complicated contractual system still allows agencies to divert responsibility, its detractors say.
DHS and the Department of Economic Security sometimes squabble over who is responsible for funding care. And DHS and its RBHAs clash as well.
"Ask DHS about a problem, and they say, 'We don't administer services.' Ask the RBHAs, and they say, 'Ask DHS where the money is for us to do that,'" Arnold says.
Bird thinks it'd be nearly impossible for a family to fight a denial of funding without the assistance of an attorney, largely because of how intertwined -- and clashing -- these departments and contract holders can be.
Isham says it all comes down to the bottom line. As a former RBHA employee, he says he's seen "an orchestrated effort" to deny funding, especially for costly residential treatment. DHS declined an interview request. Maricopa County and Northern Arizona's RBHAs did not return requests for comment.
In addition to being an obstacle to care, the multiple contractual levels of Arizona's system may be the exact reason why the state lacks residential facilities for children like Matt in the first place, Arnold says.
"I would suspect that the reason we don't have providers here is because of this construct," Arnold says. "At the bottom, there's not enough money in our system. So much gets siphoned off before actual care that there's a disincentive to come here and establish a company."
To get help for her son, Sandra Enriquez had to learn all about Arizona's Venn diagram of providers. But long before she reached that point, she had to learn what autism was.
Matt Bourne was Enriquez's fourth child and her only boy. She had no complications during her pregnancy. "Nothing indicative of what was to come," she says.
"Before Matty, we had a typical lifestyle. The girls did ballet, I was involved with school, my husband ran the business. Everything was great. But this totally changed our lives," she says.
When Enriquez speaks about her son, you can hear the anguish in her voice. She loves him. She's scared for him. And she's exhausted.
Matt was developing normally until his 11th month, she says, when he started to suddenly regress. He lost his ability to maintain eye contact and went from table foods back to baby food.
By age 1, Matt still wasn't speaking. Enriquez told her Cottonwood pediatrician that she was concerned, but the doctor suggested they wait to see if things improved.
One day, Enriquez went to get a flat tire fixed. In the mechanic's waiting room, she read a Newsweek article about autism. She had never heard of autism, but she immediately knew that the children described in the story sounded just like her son. "I said, 'This is Matthew. Everything down to the letter.' It was like a light bulb."
She brought Matt to the Melmed Center in Scottsdale, where he was formally diagnosed with mild to moderate autism just five days before his second birthday.
Enriquez got Matt involved in state-funded therapy programs, but it was tough to find in-home services providers in Cornville, a town of just a few thousand people. The family home was out of reach, and Matt's behavior was a deterrent as well. He would cry incessantly and refuse to eat, and he was still nonverbal.
Family and friends didn't offer much support, Enriquez says, and the pressure began to take a toll on her marriage. In her book, Liza Long cites a 1999 NAMI report in which 70 percent of families with mentally ill children reported severe marital stress.
Enriquez filed for divorce when Matt was almost 3. After the split, she shared custody of the kids with her ex-husband and worked odd jobs with the help of babysitting assistance from the state.
Matt's aggressive behaviors began when he went to school. He would shred papers off the walls and rip up his clothes. Loud sounds bothered him. By kindergarten, he was placed in a self-contained special education classroom, and his diagnosis was upped to severe autism with ADHD.
In second grade, his behaviors escalated further, particularly at home. He started hitting, throwing food, and even smearing his own feces. He once latched onto a caregiver while he drove, Enriquez says, and his state-funded services were temporarily suspended as a result.
A behavior analyst came to the home and created a plan for Matt, but it didn't include much that Enriquez wasn't already doing. Over the years, she'd become a self-trained expert in autism. She learned sign language to communicate with her son. She taught Matt to maintain eye contact and worked with him on the academic skills he wasn't getting in school.
But she couldn't teach him to control his violence. Matt was now throwing feces, spitting, and knocking over furniture. The causes of his outbursts were -- and still are -- a mystery. Soon, keeping help in the home became nearly impossible.
"I would say, 'This is what he does. Can you do it or not? Don't waste my time,'" Enriquez says. "They would try for a day or two, but it got to the point where they'd hear his name and say no."
Eventually Matt's sister Christy, who was by then 18, got a job with a local caretaker agency. Through that job, she was placed in her own home, hired to care for her brother.
By third grade, Matt was having more issues in school. His special education team eventually called together an emergency meeting to discuss placing him elsewhere. Using pro bono legal assistance, Enriquez got the district to fund Matt's attendance at a private school for kids with autism in Prescott, one hour and 15 minutes away from their home.
Matt did well there at first. He finished third grade in Prescott, and that summer his sister babysat him while Enriquez worked at the hospital. Enriquez met someone and remarried. But Matt's behaviors weren't better; the family was just used to them.
"His behaviors had gotten so bad at home, but we just dealt with it," Enriquez says. "It's sad because that was our life. We just adjusted to it."
When Enriquez left for work in the early morning, her daughter would crawl into bed with Matt. Even a single unsupervised moment could allow him to climb out a window, urinate on the floor, break the bathroom mirror, or rip cabinets off the wall.
"Many parents of mentally ill children never get any downtime," writes Long of the experiences with her own son. "The exhaustion level alone is something only full-time caregivers can truly understand."
By late November 2013, Matt was having outbursts on a daily basis. Enriquez never called the police -- "I refused to do that," she says -- but his violence was extraordinary.
The Northern Arizona Regional Behavioral Health Authority, which covers Cornville, funded a psychiatrist for Matt, and though the boy had been medicated left and right, nothing seemed to work.
Matt began projectile vomiting regularly at school, and he repeatedly was sent home sick, Enriquez says. Eventually, the school said it could not educate Matt because of his behavioral issues. It agreed to keep Matt through the end of June, but when the school year ended, Enriquez was at a loss for what to do.
She contacted special education attorney Lori Bird, who was the first person to raise the idea of getting Matt help in a residential treatment facility. Enriquez wondered whether she'd found the right lawyer. She didn't want her son living away from home.
But Bird persisted.
"She said, 'Well, what are you going to do when he hurts somebody? When you have a lawsuit against you? When he does something like you hear about on the news, and people ask why didn't you get him help?'" Enriquez says. She eventually decided that Bird was right.
So when Enriquez finally sought funding for residential treatment for her son, she was shocked that the RBHA declined the request, ruling that such treatment was not medically necessary for Matt.
Treatment must be deemed medically necessary for the state to fund it, but with children, the definition of "medically necessary" is meant to be broad -- anything that will provide a benefit to the child, Bird says. But in her work on cases like Matt's, Bird has seen RBHAs deem services medically unnecessary even when medical providers have recommended them.
The Northern Arizona RBHA did not return calls for comment on Matt's story.
As Enriquez and her attorney researched options, Bird pointed out many services that Enriquez had never realized Matt was eligible for. As part of their denial of funding, Enriquez says, the RBHA claimed that she had refused such services in the past, which she maintains is not true. But she accepted some of these in-home services, knowing that it was likely too late for them to turn Matt's behavior around, as a show of good faith. When they, too, failed, state agencies finally agreed to fund Matt's residential placement.
The RBHA paid for Enriquez to visit a facility in Kansas, which she loved, but she learned that the wait for a bed there would take months. While she was still on that trip, Enriquez received a phone call from a facility in Florida called Devereux, saying it had a bed immediately available for Matt. Though she couldn't afford to visit the facility, and though it meant sending her 10-year-old across the country, Enriquez accepted the slot.
"If we had a program in this state, we could take the kids, and take kids from other states," says Lori Bird. "To find people to move to Arizona with the expertise, it's going to cost money. But it cost us $150,000 just to get one kid to Florida. And that's not even the treatment."
One local specialist agrees with Bird and hopes to provide a solution. Bryan Davey, president of Highland Behavioral in Phoenix, has been involved for more than a decade with applied behavior analysis, said to be the only method proven effective in the treatment of children with autism.
"One thing I noticed living in Arizona the last seven years was that there is no kind of intermediate stopping point for kids to access services prior to everyone throwing up their hands," Davey says. "They blow up out of school, maybe out of a group home and their own home. It's crisis mode. Families look for services, and where do they go? Out of state."
"It slapped me across the face that we should be stopping these residential treatment center placements if we can," he says.
So Davey is trying to start a kind of in-state Devereux. He's putting together a team of psychologists, psychiatrists, board-certified behavior analysts, and pediatricians to work collaboratively with kids like Matt. His program will take kids with autism, developmental disabilities, or brain injuries.
Davey plans to employ the methods used at some of the nation's best residential treatment centers.
The Kennedy Krieger Neurobehavioral Unit in Baltimore, considered the premier treatment center for kids like Matt, uses an intensive process to help its patients.
First, there is an assessment, used to determine biological and environmental variables that are triggering unwanted behaviors, says Dr. Louis Hagopian, the program director. Analysis of a patient's medications is included in the assessment. Krieger patients arrive on an average of nine medications, Hagopian says, and the facility comprehensively analyzes which are actually helping.
Staff members then create a treatment plan to quash those behaviors through targeted interventions, like teaching a child new skills, changing a child's environment, or using medication to work on biological variables, Hagopian says.
Once a functional plan has been developed and tested, it is de-intensified slowly until it is replicable in a less-controlled environment, like the child's home.
Krieger leaves kids with a behavioral treatment plan, a list of medications that are working, and training for caregivers to help kids stay on track.
The intense coordination of all aspects of treatment -- heavy observation and data collection, an examination of a patient's medications and overall health, and the creation and testing of the behavior plan -- is what makes facilities like Krieger stand out.
It's also what makes them succeed. Over 80 percent of Krieger's patients show a reduction in problem behaviors by 80 percent or more by the end of their stay, Hagopian says.
But, like Devereux, Krieger's bed count is limited, its cost is exorbitant, and its location makes it difficult for parents to be involved in a child's treatment.
So Davey plans to try something different. Instead of utilizing a residential facility, his program will bring treatment teams directly into a child's home.
"The thing we're starting out with is kind of a community outreach program," he says. "We hope that through outpatient treatment, we can make at least enough of an impact to keep these kids in Arizona."
His program will use the comprehensive team structure and intense data collection model employed by facilities like Krieger and Devereux.
"It takes an intense amount of expertise," he says. "That's the reason, in my opinion, it's so hard to put these together."
"I'm going to tap into all the people here who owe me favors," he jokes.
Davey already has seen overwhelming interest in his program, from both families and agencies. He hopes to open by late September and wants to take on 20 cases during the first year.
His program will be expensive, but he is working on getting in-network with insurance providers and on forming relationships with state agencies to defray costs.
"I hope they all recognize that the dollars we spend collectively are going to save dollars in the end," he says. "Instead of shipping a child to Texas or Baltimore for hundreds of thousands of dollars, if we can do it here for $50,000 or $60,000, that makes more sense."
In the first months since Matt's been away, his family has had difficulty adjusting. "Everybody is still kind of on pins and needles. If somebody drops something, everybody jumps," Sandra Enriquez says.
But they have tried to move forward. Enriquez and her husband invested over $1,000 in fixing up their damaged home, confident the repairs will last now that Matt is gone. And the family members are enjoying their newfound ability to do simple things, like leave the house collectively. In the past, someone always had to stay home with Matt.
"We are just trying to rebuild ourselves as a family, and we don't even know what that's like, because every day of my life, every hour of my life, was catered to Matthew and his care," Enriquez says. "I'm just starting to kind of live, I guess."
But the struggle isn't over simply because Matt is away.
"Just because Matthew is in Florida doesn't mean that he's still not my number one priority," Enriquez says. She says she's worried about the care he is getting so far away from home. Her husband complains that she still spends all her time focused on Matt.
Enriquez has Skyped with her son a few times so she can see how he looks and so he can hear her voice. But Matt remains mostly nonverbal. He will turn 11 next month.
So far, Matt's behavior hasn't improved. The first report Enriquez received, less than a month after Matt's arrival, said he'd committed 47 self-injurious behaviors, including biting himself and punching himself in the head and face. He'd had 10 incidences of fecal smearing.
But he was doing better at trying to communicate his needs.
With state funds, Enriquez was able to visit Matt in August. His self-injurious behaviors had escalated even further, she learned, though his acting out toward others had declined.
Enriquez looks forward to getting a proper evaluation and diagnosis for Matt, as doctors over the years have suggested that his behaviors are symptomatic of additional maladies. Devereux has already added severe obsessive-compulsive disorder to Matt's autism diagnosis.
Matt's just started the school component of the program, and Enriquez looks forward to seeing whether his academic skills improve at Devereux. She and her ex-husband are visiting again -- funded by their RBHA -- on September 19.
It's not clear when Matt will get to come home. Most children aren't released from residential treatment facilities unless they are controlling unwanted behaviors at least 90 percent of the time, Enriquez says. At Matt's intake, Devereux told her to expect him to be there for at least eight months, depending on how quickly his behaviors improve. She's spoken to parents whose kids were in facilities for four years.
Enriquez tries to remain hopeful. She thinks of one family she heard of whose son could go out socially after residential treatment.
But she also worries about what it will be like when Matt eventually comes home. "How we're going to cope, how we're going to handle it," she says. And what if nothing works?
"I'm worried that Matthew won't be able to come home, that we'll have to keep him in some kind of setting," she adds. "Those are the kinds of things we are constantly thinking about."
When Liza Long's blog post went viral, she received many responses. Some praised her for her decision to come forward with her story. But others suggested that she had made public what should have remained a private family matter. Long has said that her book is a reaction to the silencing stigma she faced for simply talking about her son's mental health issues.
Like Long, Enriquez thinks it's important to put a face to stories like her family's. She thinks frequently about families like Long's and families like her own. Families who have felt desperate, like there is nowhere to turn.
"That is the story I want to tell," Enriquez says.
"I want to tell the story of suffering and desperation that families like mine are going through. I want to show that we need help, services, and support. I don't want to sugarcoat this or put a happy face on it."