Kathleen Bischel Beddow knew there was something wrong with her “beautiful boy” — something that others would not or could not see. He was bright and very verbal with an unusually gifted command of language, even as a 2-year-old.
But her mother’s intuition told her there was “something odd” as her pregnancy with her second child progressed and her son expressed no curiosity and no interest whatsoever in the imminent changes to the family. And she found it disturbing and chilling when, after bringing her daughter Sonja home, the boy would not look at or acknowledge the baby’s existence. Was it studied indifference? Inability to comprehend? Something Freudian? It was hard to find words for what was going on.
“You are so lucky,” other young parents in their tight-knit Mac-Groveland neighborhood in St. Paul would tell her. “Our older one is trying to kill our younger one.”
But Beddow did not feel lucky, and she went to work on her own brand of behavioral modification: “No breakfast until you say good morning to your sister. We are civilized in this house.”
The year was 1985, about a decade before Asperger’s made its first appearance in the Diagnostic and Statistical Manual.
And so Kathleen and her husband, Earl (Rick) Beddow, forged ahead and did the best they could as parents. Kathleen, who knew how fragile and volatile her son was becoming, made it her mission to keep tabs on him. She soon built a reputation as the “school mom who would do anything. You want letters cut out? I’m your mom.”
To this day she speaks gratefully of Capitol Hill Magnet School’s highly structured and challenging environment — which she says was the saving grace of her son’s elementary years.
A double whammy
But back-to-back complications wiped out whatever control the parents thought they might have had, and exposed the seriousness of their situation. First, Kathleen was diagnosed with stage 4 ovarian cancer.
As she clawed her way through chemotherapy and multiple bouts of viral meningitis from a weakened immune system, she’d tell herself: “I’m not dying. I’ve got these two kids — a 9-year-old and a 7-year-old, one of them with problems. So obviously I have to survive.”
A few years later, in the summer after his sixth grade, the Beddows’ son began to have seizures. At first they were mild, and then they progressed — from “absence” (staring vacantly) to “generalized tonic clonic” (jerking limbs and face).
They left the boy utterly depleted. The school (whatever school had agreed to take him) would call the parents to come and get him, and he’d sleep it off in his mother’s TA office at the University of Minnesota’s School of Public Health, or on the floor of his father’s Ramsey County Courtroom chambers.
Concurrently, the boy’s social interactions deteriorated, and he became easy prey in the Darwinian halls of the many and varied junior high schools that were being tried. As he was manipulated, beaten and bullied, he became increasingly rageful, verbally abusive, violent and difficult to control — at school and at home.
There were many trips to psychologists, and many different therapies and treatments were tried — despite the lack of any diagnosis. As well, there were multiple medical appointments that involved brain-mapping, video monitoring and invasive electrode monitoring to determine the focal point of his seizures.
The Beddows’ son was 14 years old when he finally got a diagnosis of Asperger’s. (Now the family could understand his flat affect, his rigid behaviors, his agitation, his inexhaustible arguments, his seeming arrogance.) And he was 17 years old when he had brain surgery to remove all of his right temporal lobe, the focal point of his seizures and where a tumor was discovered postoperatively. After the surgery, though he no longer had seizures, his rage ramped up unabated.
At home, for a few hours’ peace, the Beddows would let their son deconstruct anything of his choosing: bicycles, a stand-up freezer.
When he became physically out of control, the Beddows would have to call the police. Kathleen would do the advance work: “When the police would come, I’d meet them in the foyer of our house and say, ‘I want you to know: We love him. He is a beloved boy. He has something wrong in his brain. It isn’t him; it’s his behavior. I will go with you, and we will do whatever. But please be careful, be thoughtful.’”
And time and again, they were.
The phone call
At the urging of the county, when their son turned 18, the Beddows had him placed in a group home on Lexington Avenue in St. Paul.
Though they got some relief, they also were apprehensive: How would he do in a group home setting? How would he handle the relative freedom to move about? How would he interact with the others?
Not well, as it turns out.
For the teen, the streets of St. Paul were not unlike the halls of junior high. There were more assaults and beatings. To protect himself, he kept a baseball bat under the bed.
During an altercation with group home residents (including one man who suffered severe PTSD from child neglect and abuse and another who had systemic injuries from a near electrocution at work), the Beddows’ son got his bat and took a wild swing, connecting with the head of a resident who had stepped in to mediate.
His victim, an already significantly impaired man, suffered more severe brain injuries as a result.
Kathleen remembers her son’s flat tone when she answered his phone call that night: “Mom, I’m in jail,” he told her. “I think I might have killed a guy.”
Kathleen woke her husband, and headed straight to the hospital, where her son’s victim lay comatose. She weeps at the memory of having to face him and his family: “I thought, my God, I have to go see if he’s OK and if his family’s OK. And tell them, ‘I’m here. I’m so sorry. I don’t want to interfere, I don’t want to intrude, but I just want you to know this is the first place I have to be.’”
She never had the chance to apologize or extend her sympathies. There were no family members present when she arrived at the hospital.
A strange kind of relief
The Beddows’ son was convicted of second-degree felony assault with a weapon against a vulnerable adult. While awaiting sentencing and going through the civil commitment process, he spent a year in the Hennepin County Adult Corrections Facility (aka the Workhouse).
Kathleen and her husband sat with a mix of powerful and opposing emotions: They were horrified and grief-stricken by the incident. They were also relieved that their son was in jail: “We knew where he was. We weren’t going to find him on the freeway. He wasn’t going to be here [at home] damaging everything, damaging relationships, and arguing nonstop.”
Admitting to this relief was a bitter thing: “Is this what it feels like to have a vacation in Hawaii?” Kathleen asked her husband.
Their son eventually was judged to be mentally ill and dangerous, and in 2003 was committed to Minnesota Security Hospital in St. Peter for an indefinite period. The next 11 years would test Kathleen’s advocacy skills, her patience, her perseverance, her dignity, her marriage, and, if it were not tested enough, her mother’s love.
Kept in the dark
The 400-bed, century-old Security Hospital’s troubles are well known to all: A 2010 legislative auditor’s report cited systemic problems that had “persisted for years,” including high staff turnover, leadership shakeups, confusing and conflicting lines of authority, a shortage of psychiatrists, a shortage of time devoted to residents’ mental health care, shifting rules regarding patient treatment (especially around the use of seclusion and restraints), and a high number of staff injuries. The auditor made note of the tensions between those with a “correctional” approach to patient treatment, and those with a “person-centered, trauma-informed” approach.
A Department of Human Services inspector general’s investigation released in May in the wake of a killing in January on Unit 800, the hospital’s high-security admissions unit, reported that the hospital had “failed to provide adequate supervision” to the patient who was killed and the patient who stomped him to death. According to the investigation, the death went undetected for two hours as the alleged killer approached staff (twice) for laundry soap to wash his bloody clothes and shoes. The report also noted that the alleged killer had asked to see a doctor that day because he was having “crazy thoughts.” He was told he would have to wait.
By the time of the killing, the Beddows’ son had made it safely through Unit 800 and moved on to one or more units with more privileges and less supervision. To Kathleen’s knowledge, her son had never faced a situation quite as dire or life-threatening.
Though genuinely grateful that he apparently was doing better, Kathleen was never sure how or why. The family was kept in the dark from the start, she said: “There’s no printed material. There are no family meetings. There’s no getting together and saying, ‘Here’s what we’re going to do for your son.’ There are no questions about: How involved do you want to be? How much do you want to know?”
Kathleen said that she was always (and still is) careful to use gratitude-first language before asking a question, making a request, challenging a rule or seeking information, and that she always offered to be part of the solution.
“I’d tell them, ‘I really appreciate what you’re doing here. We know him. We love him. But we know he’s very difficult to work with.’ I never said, ‘He’s innocent; what’s wrong with you?’ I know he’s [there] because he’s mentally ill and dangerous, and I don’t have any illusions about that.”
So she would plead with staff: “Help us. We want to help you. Bring me in. I want you to know I’m on your side, so let’s be on the same side together.”
But there was not going to be much in the way of family engagement (even though her son had signed all releases).
When she appeared in person for periodic team treatment meetings, she said, “It was as if I walked into a room in Soviet Russia: Gray, stone-faced people sitting at the table … not one single person introduced themselves to me. Not one single person said, ‘Hi, good morning, good to see you, thanks for coming.’”
No pictures, please
The care team’s approach to her son, she said, was punitive, focusing only on what he had done wrong. There were other features of hospital culture, Kathleen said, that left her frustrated and even outraged:
- With the exception of the main high-security unit, the visiting rules were never in writing, and could change from week to week or unit to unit. At one point, Kathleen said she was interrupted during a two-hour visit and instructed to “go into St. Peter and get a sandwich.” She had driven two hours to visit her son, had no interest in a sandwich, and saw no reason why the visit had been interrupted. When she asked to see the written rules, the “security counselor” ruffled through some papers but could not produce them.
- Her son’s inability to eat most foods was ignored, and his requests for milk, raw vegetables and yoghurt were denied. “He was hungry,” Kathleen said. After repeated requests, she was granted a visit with a nurse to explain her son’s food issues. The nurse was “unresponsive,” she said. Further, the food rules seemed to change incongruously, and were less restrictive in the more restrictive units and vice versa.
- Family photos were to be shot by a “security counselor” only. “We are not allowed to hold a camera and take a picture of our child. We are only allowed to bring a camera in occasionally and hope the security counselor on duty will say yes. We never know. We have to hand the camera to the security counselor, who then will take the picture.”
- Contact between family members was limited to one brief hug and nothing more. “That’s not allowed. Separate. Move aside,” Kathleen was told when a security counselor observed her son giving her a foot and lower-leg rub. It was what they used to do after school when her son would download all his “anger, violent ideations, words that he had heard, things he had thought. Horrible things.” They’d sit on opposite ends of the couch, and the physical contact was a comfort to them both.
Kathleen was aware enough of the power differential to know that there could be reprisal if she ever pushed too hard or got too nosy or objected too loudly. Indeed, there came a day that she got a kick-in-the-guts reminder to keep her place.
“You’ve been sexually inappropriate with [your son] on two occasions,” she was told by a unit supervisor, as she sought a written copy of the rules regarding visiting hours. There was the foot rub. And then there was the time she sniffed her son’s hair to see if he’d been showering (because not showering, the Beddows had learned, was a mental health red flag).
Kathleen’s explanations fell on deaf ears. No action was ever taken, and the accusations were never repeated. But the shot across the bow left its permanent mark.
Other moms speak out
After the inspector general’s investigation of the Unit 800 killing was issued in May, NAMI Minnesota called a press conference, saying that it was time to “stop admiring” the problems at St. Peter and take immediate action, including finding ways to engage family members in developing treatment plans and helping to identify triggers and strategies that have been helpful in the past.
Two mothers, who asked not to be named, spoke to reporters after the press conference, echoing some of Kathleen’s grievances.
One spoke of a lack of mental health therapy: “My husband and I had advocated in every single way we can think of to get some therapy that means something down there. You can call ‘going to the gym’ therapy. OK, they do need to go to the gym. You can call ‘going to Sunrise’ [the canteen] therapy. OK, that’s great, you go for a little walk outside. But where is the mental health therapy?”
Another spoke of the lack of family engagement, despite repeated requests to form a family/patient advisory council: “There were several of us that just begged: Please contact us. What can we do? What can we offer? We want a connection.”
Said NAMI President Sue Abderholden: “What is particularly disheartening is that many of these individuals ended up in St. Peter because they could not access timely appropriate treatment and care in the community. And now they cannot access timely appropriate treatment and care at St. Peter.”
‘A better hospital’
Things are very different these days for the Beddows. After 11 long years, their son will be coming home this weekend for his first overnight stay.
He’s in a transitional care unit at the Security Hospital now, an experience that Kathleen describes as worlds apart from her earlier experiences. The staff are courteous, even warm, she said. At one treatment team meeting, each staff member started by telling her son what he or she most liked and admired about him.
They’re working closely with the Beddows and their son to locate appropriate after-care housing: “Do you need to live in a place where you can cook? Do you need transportation? Do you need your own bedroom?”
The Beddows are still married, but they live apart, just blocks from each other in downtown St. Paul. There isn’t much left to their marriage, Kathleen admits, but she and her husband remain strong parent partners, bound “by the bottomless grief that never goes away … and our son and daughter.” This weekend, with their son, they’ll help Sonja, now a lawyer, move her furniture to her and her fiance’s house. There’s nothing too stressful or taxing on the agenda. Just family time.
The change in her son’s status (and freedom from fear of reprisal), has given her the courage to tell her story, Kathleen said. During her 11 years of driving to St. Peter for monthly if not weekly visits, she also returned to school and became a licensed marriage and family therapist, to more effectively advocate not only for her son but also for others like him.
“I am grateful he’s been there [at St. Peter],” she said. “Where else would he be? There is no other place for him. I don’t want St. Peter to go away. I want there to be a state hospital for people. I want it to be a better state hospital.”