Seclusion and Restraint – One Mother’s Personal Story

This is a story from one of our Autism Allies that fortunately has a positive outcome, but not necessarily a happy ending. Unfortunately, like many similar stories about how individuals with autism are treated in society, many people suffered before the positive outcome was reached.

The First Incident: The First Day of Fourth Grade

The story begins about 12 years ago when my son Josh, who was eight years old at the time, went to school for the first day of fourth grade. I don’t know all of the details of my son’s incident, because a report was not written, but I’ve since learned that a school custodian was involved with restraining my son.

As far as I know, Josh’s incident on the first day of fourth grade began because he refused to open his textbook when repeatedly instructed to do so. He eventually crawled under his desk when the pressure of the situation became too great to bear. The teacher, who was new to the job, eventually called for the school’s Action Team to intervene. (When we eventually met with the school staff to discuss the incident, I recall the teacher stating, “I can’t have him climb under his desk, because then I’ll have everyone climbing under their desks.”)

When the Action Team arrived in Josh’s classroom, they wanted to escort him from the room, but he didn’t want to leave. They ended up forcibly removing him from the classroom. As I understand what happened, four people, including the custodian, each grabbed one arm or leg and then they literally carried him from the room. To this day, I still don’t know exactly what occurred.

At the end of the school day, when Josh exited the school bus, he was so upset that he collapsed at the end of the driveway. He was covered in bruises and shaking uncontrollably because he was so distressed. He was unable to communicate what had happened to put him into such an emotional state. Because the bruises were so bad, I called the Sheriff’s office to report my son’s injuries and told them if I had caused bruises that severe I would have been arrested. The response I received was, “That’s a school matter, not a matter for the Sheriff’s department.” Naturally, I was infuriated, because it felt like the school operated under its own set of rules and the staff could do anything they wanted without consequence.

When I called the school about the incident, I was told by a school administrator that they were not required to file a report or notify parents of the incident. I was utterly frustrated because on that same day I had been notified by phone that Josh’s younger brother was administered an icepack by the school nurse as a result of a minor incident on the playground. I couldn’t believe that an incident report was created and I received a phone call about a very minor injury that only needed an icepack as a remedy, but no report was filed or phone call made for an incident that caused my son to be badly bruised and become an emotional wreck.

Josh did not return to school for a few days, until after his father and I had met with school administrators and the teacher. We discussed Josh’s existing Individual Education Plan (IEP) as a means to deal with his behavior. The IEP had been successfully used during the previous three school years, during which there had been no incidents. It turned out that Josh’s fourth-grade teacher had not been made aware of the IEP before the first day of school.

The Second Incident: A Few Days Later

After his absence of a few days, Josh returned to school, for what was his second day of fourth grade. Unfortunately, it became his last day of fourth grade, because another incident occurred. By the time I was called by phone and then arrived at the school, Josh was in the Resource Room—in a fetal position underneath a beanbag chair. That was very alarming to me, especially because I did not know the details of the incident.

I was told that Josh and his classmates were outside playing kickball during a recess period. A symptom of Josh’s autism is that he strictly adheres to rules, and apparently something related to a violation of the rules happened during the kickball game that caused him to sit down on the ground and refuse to leave the playground. Again, the school’s Action Team was called to the scene. I still have no idea about exactly happened from that point of the story until the time I arrived at school and found him curled up under the beanbag chair, because no documentation of the incident was required at the time.

The Aftermath: Josh Shuts Down

After the second incident, Josh just “shut down” and was never able to return to school that year. He reverted back to going to the bathroom in his pants. He was so distressed that he absolutely refused to leave the house for any reason, even to go visit his grandparents who lived just a few miles down the road. I’m not exaggerating when I say he literally would not leave the house. You can imagine how distressing that was. He then started becoming aggressive at home, which became a safety issue for his younger siblings.

Something was definitely wrong with this scenario, but I had no recourse. I had to take a three-month leave of absence from work to stay home with him during the day, and then my mother-in-law had to take my place when I returned to work. We took Josh to Short Stays, which is like a psychiatric mental health provider, but that experience was horrible for him. He was there for two weeks and when he came home he still had not made any progress.

In neither incident at school did Josh become violent, yet both incidents progressed directly from refusal to restraint. Despite the fact that Josh never returned to school after the second incident, it wasn’t until months later that anyone from the school called us to ask where Josh was. In March—six months after the incidents occurred and Josh had not returned to school—I was so angry that I showed up at the school district’s Superintendant’s office with a photo of Josh and I refused to leave because my son was at home and nobody was helping me. After that, the school finally sent a psychiatrist to our house to conduct an evaluation. Too little, too late.

The Diagnosis: Autism

When Josh was nine years old, he was formally diagnosed with autism. We instinctively knew much earlier that he had issues, which is why we had an IEP in place at school. Until things took a definite turn for the worse in fourth grade, we were able to deal with his issues without having to make too many special accommodations. We ended up sending Josh to a residential service provider to pull him out of his distressed emotional state—and that took two years.

Twelve years later, Josh still won’t talk about all of the details about what he had to endure during the second incident in fourth grade. And I still don’t know all of the pertinent details about it. Josh has mentioned that during one of the incidents the school’s custodian sat on his back, but that is the only detail he’s mentioned. He currently has extreme phobias and anxiety, which I believe are directly linked to what he experienced during those restraint episodes in fourth grade. Those incidents still impact him.

The Legislation: Commission on Seclusion & Restraint In Schools

In 2013, I was asked to testify, about Josh’s incidents, at an Indiana legislative hearing concerning a proposed Seclusion and Restraint bill being considered. My main concern at the time was the need for schools to be required to officially document and notify parents in a timely manner about similar incidents—before the student arrives home in a distressed state. I fully understood that certain types of situations occur in which seclusion and restraint are needed to ensure the safety of everyone involved. However, I also knew that schools needed to start communicating with parents about the specifics of the event and related issues.

Another major concern I had when I testified was whether or not people responsible for restraining and secluding a student were properly trained to try to de-escalate a situation first. Then, if restraint and seclusion were required, the staff at school were trained to implement those tactics safely. I heard that one of the other parents who testified at the hearing had a daughter with Downs Syndrome whose feet and hands were bound by duct tape on a school bus.

The intent of the bill that was enacted in 2013 is to make sure there is proper training in schools about seclusion and restraint tactics and that there are proper communication procedures for notifying parents, if those tactics are used on a child in school. After the bill was passed, a Department of Education Commission on Seclusion & Restraint In Schools was formed, according to its website, “to draft rules regarding the limited use of either seclusion or restraint by public, charter and accredited nonpublic schools. In addition, the Commission was charged with creating a model plan to aid schools in the creation of school specific plans.”

The Story Continues

After Josh’s two years at a residential facility, he returned to school and made some progress, but he “shut down” again during 10th grade and never again entered the school building after that. He eventually received a certificate of completion from the school system, but he did not formally graduate with an official high school diploma. Today, we’re embedded in the world of adult services, including Vocational Rehabilitation, but we’re not even close to him being able to survive on his own. It is a disheartening situation for him to be in and it seems crazy to me that a series of events that occurred a dozen years ago is still impacting us.

It would be nice if I could state that our story had a happy ending, but at least our unfortunate situation has somewhat contributed to the enactment of the Seclusion and Restraint legislation that currently exists in Indiana. Hopefully, better training and communication policies are in place throughout the state to help prevent future incidents like those Josh suffered through, and which will probably have an impact on him for the rest of his life.

Learn More About Seclusion and Restraint

You can learn more about Indiana’s Seclusion and Restraint legislation and the work of the Seclusion and Restraint Commission by clicking the links below:

Kelly Pence, ASI Autism AllyThanks to Nicole Hicks, Autism Society of Indiana Autism Ally, for her contribution to this article. If you have any questions, please contact her at nicole@inautism.org or by calling 800-609-8449 x909.

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