Her son was restrained and secluded dozens of times. Now, she's devoting herself to ending the practices

Sometime after her son was restrained or secluded for the 20th time in a single school year, Latisha Johnson decided she'd had enough. It was 2017, and her son, Christian, who is autistic and non-verbal, was a student at an Area Cooperative Educational Services (ACES) program for children with autism and other developmental disorders. The then 16-year-old was, in his mother's words, "an awesome young man," but was also prone to act up and sometimes difficult to calm. At home, Johnson used aroma therapy, played relaxing frequencies for Christian and gave him supplements meant to ease his anxiety. Sometimes she'd seat him in a rocking chair with a warm blanket. She'd learned from experience that answering aggression with aggression only made his outbursts worse. At school, though, the approach seemed to differ. Again and again, Christian was physically restrained and locked in a padded room, where Johnson says he would sometimes strip off his clothes in frustration. Documents Johnson shared with CT Insider, which included records of Christian's "aggression" and "elopement" from class, show that staff restrained or secluded him 47 times over a two-year period for a total of more than four hours. "They would restrain him, then put him in the seclusion room," Johnson, who lives in Stamford, said in an interview. "When you go for a tour of the school, they show the room, but you never think that it's going to play out the way it does." Along the way, Johnson noticed changes in Christian's behavior at home, where he was more anxious and occasionally even violent. Sometimes he'd shove or scratch her, once breaking her arm during an outburst. Eventually, Johnson pulled Christian from the school and began to home-school him. Later, she found a school across the state border in Rye Brook, New York that didn't use restraint or seclusion and sent him there. Five years later, Johnson has decided that keeping her son from being restrained or secluded isn't enough. She now plans to do whatever she can to end the practices for all students. "This is my thing now," she said. "I'm going to commit the rest of my life to making sure that those seclusion rooms are shut down and closed and turned into calming rooms." Johnson was one of several dozen parents, advocates and experts to submit testimony ahead of a public hearing Wednesday on a bill that would, among other things, replace seclusion with "time outs" in unlocked rooms and limit when restraint is allowed. In written remarks, she argued for banning both restraint and seclusion, which taught Christian "nothing but to use violence to communicate." More and more, Johnson has channeled her energy into activism. She has met with officials at the state Department of Developmental Services, sharing her and Christian's story. She has also become involved with the nonprofit CT Family Support Network and has taken free courses on parent leadership and civic engagement. Margaret Kozlark, a fellow parent of a child with autism who met Johnson years ago at a parent training and has kept in touch with her since, said she has watched officials and administrators underestimate Johnson, who is Black, seeming to treat her differently from white parents. She has also seen Johnson continue to advocate for Christian nonetheless. "She's a freaking rockstar," Kozlark said. "She will fight to the end of the Earth for her son. She is the most amazing mom." Johnson says she still thinks frequently about her son's experience with restraint and seclusion, often with pain and regret. She hasn't forgiven ACES, a regional program operating six special education schools in New Haven County, for what she sees as an unnecessary use of physical interventions. According to state data, ACES schools restrained and secluded students more than 1,000 times during the 2016-17 school year and has maintained similar, or sometimes higher, levels ever since. "It makes me sad," Johnson said. "I hate that he had to go through that part of his life. I hate that I left him there so long." In an email, ACES executive director Tom Denehy said he could not comment about individual students but that ACES staff members were sometimes forced to use restraint and seclusion due to the high-need population they serve. "The significant behavioral needs of our students sometimes require the use of safety management measures, such as restraint, seclusion, or forcible escorts," Denehy said. "Such measures are used only in situations requiring intervention to prevent immediate or imminent risk of harm to the student or others and to maintain safety." After several years at the school in New York that doesn't restrain or seclude students, Johnson said, Christian has "blossomed," showing less aggression than he did during his time at the previous school. Johnson wants Christian to live as independently as possible and is currently exploring housing options. Some of her leads are in the Hartford area, and she's clear: If Christian moves north so will she. Not only would that let her be near her son, but living close to the state capital might also benefit her advocacy efforts. Parenting Christian has not been easy, Johnson said, especially as she has gone through periods of unemployment and poverty. Now, she wants to share her story so mothers in similar situations know they're not alone — and so others understand parenting a child with autism goes beyond the "fantasy stories" she sometimes sees on TV or in movies. Johnson's dream, she said, is to start an advocacy organization and maybe do some public speaking. More than anything, though, she wants to see seclusion rooms at schools like the one Christian attended transformed into "calming rooms," with soft lights and rocking chairs. "I'll be very happy," she said, "when I can go to the first one and see it switched over." alex.putterman@hearstmediact.com

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