Today’s guest author is Emily LaMarca. Emily has a background in Business and Wellness, but has focused her energy over the past ten years on advocating for Disability Rights. Her son Cole, who happens to have Down syndrome, is her biggest inspiration. She has always followed Cole’s lead and this has led her to her most recent fight against the misuse of restraint and seclusion in Massachusetts schools and dedication to finding a better way to address challenging behavior.
I often tell people that when our son Cole was born thirteen years ago with Down syndrome, that he flipped our world upside down in the best way. His love of life and ability to appreciate the moment is something we can all learn from. He has always been a loving, kind and funny little boy, just as he was when he was ten years old and started to be restrained and secluded at his school in Central Massachusetts.
Until this point, Cole’s school career had been nothing to take note of behaviorally and we were frankly caught off guard that Cole could be aggressive to the point where restraint and/or seclusion would be warranted. We had never seen this in our son. But none the less, he started being brought to, what we can only describe as a storage space off a classroom, where he would remain for close to an hour with the door shut and a paraprofessional that was instructed to ignore him. It needed a key to be accessed. I felt anxious being in that space. I couldn’t imagine Cole being brought there. We do not know how many times a day or for how long Cole was brought to, what he called, the naughty room. We only learned that it was a consistent practice after requesting his data sheets from his school record.
The incidents of restraint and physically escorting Cole were many and undoubtedly began to impact him emotionally. During a 9-day period nearing the end of his placement, he was restrained or physically escorted 13 times within those 9 days. We couldn’t get answers as to how the restraints transpired, only that our son escalated, which was the blanket term used for his behavior. During this time, Cole regressed to wetting the bed at night, having nightmares, communicating that there were angry eyes at school and started to resist school all together. He was able to communicate to us that it hurt when they held him and that he was scared. If we asked anything further he would simply say “ I can’t tell you.”
In one instance, Cole was restrained for a ten-minute period, another time he was restrained while wearing a weighted vest, although he has a cardiac condition. The last incident before we ultimately removed our son for fear of his safety, was about an hour and a half long, where he was physically moved twice and restrained. The paperwork did not show an end time to the restraint and Cole was shut in an empty classroom with the door closed, being monitored from the outside where he disrobed and urinated on the floor.
At this point in time we had already communicated to his team, including the Special Education Director, that Cole was being emotionally impacted by restraint and felt that it was in his best interest to be called immediately to pick him up, if hands on management was to be considered. I was only to receive a phone call on my way to the school for Cole’s scheduled pick up time and was met by the principal who handed me a bag of Cole’s clothes and stated, “You might want to wash these.” It would be three days before we received a description of how this situation had gotten to the point it had.
From what we could understand these incidents of restraint always began with the clearing of students out of the classroom, shutting the door and most times, having three adults block Cole, and ultimately restrain him. Anyone would be emotionally impacted if we were repeatedly put in the position that Cole was. The trauma associated with restraint would undoubtedly continue well after the physical act had ceased. This was the case for Cole.
We found a new placement for Cole and moved to a new town. During this time, I remember Cole telling me; “Mom, I might like a new school, I might, but one where my teachers don’t hurt me.” He told his sister over breakfast one morning how he used to be locked in a room at his old school and in his words “I tried to get out but couldn’t.” When he started therapy the child centered play focused on him being a bad boy and having to be locked in a crate. It then moved on to the stuffed animals being bad and they too, had to be locked in the crate.
When Cole transitioned to his new school, he was anxious, he was fearful and the trauma from being restrained and secluded once again appeared. Initially, Cole couldn’t attend school for more than 2 hours at a time and his teachers communicated Cole’s worry and distrust of any adult that was new to Cole. Despite their patience and understanding as to what Cole had been through, he still was triggered, and many times was noted being in fight or flight mode. It took months before we could even pull into the school’s driveway without Cole hitting his head against the seat of the car and repeating “turn, turn, turn.”
He was afraid of his new principal for the sole reason that his principal at his old school “used to attack him.” He communicated to his teachers that he still thinks of his old school and tells us his brain tells him he must fight. When a Scholastic Book Fair came to his school, Cole communicated his fear of his old teachers being there because he remembered book fairs at his old school. He still has nightmares and even after being at his new school for 2 years now, where he’s never been restrained or secluded, he still fears that he will be held.
For anyone that has gone through trauma, but specifically for Cole, his processing and being ready to share his experiences has taken time. Two and a half years passed before he was ready to share that an aide would withhold food from him. Suddenly, it made sense as to why the first thing he would do at his new placement was intensely eat all the food that was packed in his lunchbox.
He talked of two friends who were held and then taken to, again his words; “the room.” He talked of the sounds they made when they were being held and then asked why they did that? At the end of this conversation, the longest and most in depth he’s been about the incidents there, he said to me: “Even though they hurt me, I still love them.”
Our teachers have an extremely difficult job. We need to provide them with support and training in areas that will eliminate the feeling of having to use restraint and seclusion to maintain safety within their classrooms. Children are vulnerable to begin with and when their disability silences them we need to ensure they are given a voice.
