autism · Down syndrome

Seclusion and Restraint

Stop seclusion and restraint
Casey at age three

Casey was three and non-verbal. I had fought to get him into a preschool that was every day of the week, and for more time than the other special needs preschools in the area. I thought I had done right by him. By this time, I had three kids under the age of four, and was battling chronic pain. In the year that he was in that class, I had four surgeries and seen countless specialists all to no avail. I was overwhelmed and missed the signs.

Something wasn’t right. Casey is autistic and had always had a tough time with school. Transitions were tough. He screamed, cried, and melted down every day. We knew when we built his IEP.  In some of the forms I had signed while we were getting him settled into school was one for the use of restraint and seclusion in times where Casey was in danger of hurting himself or someone else. I asked them what they had meant, and they showed me a little chair that would slide up to a table that had a little buckle over the lap. I was okay with that. I knew I couldn’t expect the teachers to be one on one with him when they had four other children with autism to attend to.  I also knew that Casey could be explosive and I didn’t want him to harm another child or himself . I trusted that the teacher would only use these methods in the very rare even that nothing -and I mean NOTHING- else would work.  His behavior escalated at school and at home. As things got continually worse at home, I figured it was my fault.  I thought that he was picking up on my stress and my exhaustion. In pain every day, I couldn’t work with him the way he needed.

It wasn’t until the teacher of his preschool class went on maternity leave that I finally learned the truth about the situation. Casey wasn’t just being restrained by the chairs- that was benign compared to the seclusion.  One of the aids finally confessed that the teacher had been locking him in what amounted to a storage closet for extended periods of time during the day. The day I found out my heart crumbled into a million tiny little pieces. I still ache when I think about it.  There was very little recourse for the teacher. I had signed off on it. She wasn’t invited to come back after her maternity leave was over, and was thankfully replaced by one of the most amazing people I’ve ever met. But there was no discipline. She didn’t lose her teaching license. She could very well be teaching students right now.

Teachers like these are the exception to the Special Education standard. Most teachers are amazing. But not all. Some are overwhelmed. Some are under-trained and some schools are significantly understaffed. Some should have never became teachers to begin with and aren’t fit to serve the most vulnerable students.

When we had Abby, the thought occurred to me that we were again facing a situation where my child wouldn’t be able to tell us what happened at school. Where if we did get one of the teachers that suck,  we wouldn’t know it until it was too late. Until damage was done.  That’s why last summer, along with the National Down Syndrome Congress, I pounded down the doors of my congresspeople in Washington DC, with these facts (Some have been updated to reflect changes that have been made on individual state levels over the past year):

  • There is no one federal law that covers all students, instead, a ” patchwork of state laws, regulations, nonbinding guidelines, and even utter silence.” (Jennifer Butler, How Safe is the Schoolhouse)
  • The use of restraint in schools has been attributed to the deaths of at least 20 students.  Restraint is dangerous. The practice of restraint should be limited to only when there is a physical danger to students, and even then only after all other methods have been exhausted and only by someone trained in such techniques. Currently, only 18 states have laws that limit restraint to this in children with special needs, 13 for all children. Even worse, only 27 states have laws against using positions where breathing is compromised for people with disabilities, 20 for all children.
  • Only one state bans the use of all seclusion for all children, 4 ban it for children with special needs specifically. Children locked in closets, bathrooms and other places (like the storage room Casey was locked inside) are frequently left there, unobserved, for long periods of time.  Instances of children being killed, injured or traumatized have been reported.  Lots of times, children are left in seclusion until unreasonable demands are met. In Casey’s case, he was left in there and told to “calm down.” He didn’t understand those words nor did he have the ability to self soothe or calm down on his own when his needs weren’t being met and definitely not in a place that was frightening to him.
  • Only 20 states have laws requiring that parents be notified of the use of restraints or seclusion. So, if you’re not in one of those 20 states, this could go on without you even knowing.

Obviously, this is wrong. It’s wrong that most or our schools don’t have the same criteria for seclusion and restraints that hospitals and prisons have. When I asked my senators and representatives why they wouldn’t co-sponsor the bill, one of them said that the teacher’s unions didn’t want any more rules. This was after the bill was downgraded to a mandate- meaning it wouldn’t even be enforceable! States are working to enact regulations, and while some come close or even exceed the standard set out in a bill being introduced in the House, most are far from it. Some states have regulations and guidelines that aren’t binding, and then don’t go far enough to make sure that rules are being met. Fortunately all is not lost, a new bill has been introduced and it needs your support. Things have to change for our kids. There are things you can do now to protect your own child in their own school, and there are things you can do to affect change for all students.

So what can you do?

First, make sure your own children are protected. While we wait for laws to catch up to common sense, take the necessary steps to ensuring that your child is safe at school. Find out the laws in your state. If they don’t go far enough to protect your child, write provisions into their IEP. Written in Casey’s IEP is that the use of seclusion and restraints is never allowed. This wasn’t a hard thing to ask because the school doesn’t allow for it anyways. That being said, not all schools are like the one we are attending, and you need to know what behavioral plan is in place for your child.  Follow up. If you think there might be a problem at school, go with your gut. Make sure you have a relationship with the teachers and paraeducators.

Sadly, in some cases, even this isn’t enough. In the past week three personal friends have had to fight the schools over abuse, and improper restraint and seclusion. This is why there needs to be federal laws that would help instances like these to not happen, and if they did, for teachers and schools to feel the full weight of the law.

Second, make sure ALL children are protected. These laws need to cover all children, both disabled and non disabled.

Please CALL your members of Congress and ask them to Cosponsor and Support the Keeping All Students Safe Act, HR 1893. 

Dial 202-224-3121; ask for your Representative’s Office, and then ask for the education aide.
The keeping all Students Safe Act will:

The Keeping Students Safe Act will:

  • ban restraint/seclusion except in emergencies where someone is in danger of physical harm
  • require that parents be informed if their child was restrained/secluded on the same day that the event occurred
  • ban restraints that impede breathing, mechanical restraints, and chemical restraints
  • prevent restraint/seclusion from being used when less restrictive alternatives, like positive supports and de-escalation, would eliminate any danger 
  • require that if children are placed in seclusion rooms, school staff must continuously visually observe them
  • ban dangerous aversive practices that threaten safety; require the collection of data; and require appropriate training of staff

For more information please visit:  http://www.wrightslaw.com/info/abuse.index.htm
Be sure to read: http://www.wrightslaw.com/info/howsafeschoolhouse.may2013.pdf, which is where most of the figures in this post are found.

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Keep All Students Safe Act
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22 thoughts on “Seclusion and Restraint

  1. Thank you for sharing this. I’m really new to the world of I.E.P’s. I didn’t even THINK about something like this. Since our I.E.P’s are in June I will make sure to make that a provision. I’m so sorry for you and Casey..and those other children & families that have had to go through this.

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  2. You already know, and I don’t have to say it, but I will anyway. You are bleeping amazing. For so many reasons. This post is one of the top ones though. I love you Lexi. For your strength and honesty and constant, tireless dedication to fight for our kids.

    You are helping me heal.

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  3. Whoa! I had no idea. Thank you for this big wake up call. Time for me to look into the state of Texas (who just passed the law for cameras in the classrooms)! Keep on writing, Lexi!

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  4. *hugs you hard* I get the chair. I don’t get using a closet for seclusion. Maybe I’m jaded after all those years working in mental health where we had real seclusion rooms with padding and a button we had to hold to keep the magnetic lock engaged,ensuring SOMEONE was watching the child in the room. I get that it’s not feasible to have someone always standing there watching in school. The schools in Louisville that had the capability had those rooms, not closets.

    I know I’m preaching to the choir, but I have to say it. It sounds like it was horribly misused by that teacher as these methods sometimes are. Working in an agency that housed 114 kids from all over the state and sometimes needed these methods to manage out of control behaviors, we had to have someone “clinically privileged” to authorize a seclusion in the moment while we waited for a DOCTOR’S ORDER (gasp). It’s not an easy call to be that person to say yes or no. I got called off my unit one day because I was the only one on campus that could do the assessment at the time. When I got there, there was nothing to indicate that he needed seclusion. The staff just didn’t want to keep restraining him, which became a whole different can of worms as it somehow became the norm to seclude the kids if they were still being restrained (we used physical, not mechanical) 30 minutes later. I was working in the home with families at the time, but still had to maintain all my certifications. When I found this out I was so angry. When I started working there, it wasn’t unusual for us to restrain one of the boys for an hour or more. It was at least clear to me that unless the child is continuing to escalate while being restrained or getting off on it, that there was no need to move towards seclusion.

    I’m so glad you shared this and what you’ve been doing to effect change for Casey and all the other kids like him to make sure it doesn’t happen again.

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    1. True story. After we moved my son to a different school, they did have a seclusion room as you spoke of above. It was padded, and they did have to have their hand on the button the entire time if a child was to be in there. I think if the situation is emergent enough that a child needs to be in that room (and there were situations like that with my own son) then someone needs to be there with them the entire time. It sucks, but it’s necessary so that abuses don’t occur and so that children are safe while in seclusion. The other part of that was that I had to be notified THE MINUTE he was put in seclusion. Usually that was my cue to just go to the school.

      There were times when that was the only way to calm the situation. Sometimes talk with Casey doesn’t work and he just needs some time alone in a safe environment. But it needs to be regulated something fierce.

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  5. Open I change.org petition I will help you to promote it and get the signatures and support we need. I am sorry you had to go thru all what happened to Casey, I cannot imagine if that happened to my child.

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  6. Oh my! This is so, so wrong. I am the mama of a three year old sweetie with autism. We are sending him to a special preschool next year, THANK YOU for this post. I had NO idea. I am so, so sorry for what happened to your precious son, but thank you for sharing.

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  7. I about threw up when I started reading this. The idea of what that teacher did to Casey and was never punished. Thank you for openness and honesty and working to keep all of our children safe!

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  8. She is still teaching… bummer for that. But you DID have a few “teachers” that were in his court and we liked our time with him. We worked through a lot of yelling but kept on track. He learned to be in school. He is still one of my favorite people even though he probably doesn’t remember me. I love hearing about the growth and success. Things are much much better in room 9.

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  9. I so admire your strength in advocacy, Lexi. To think of your precious babe or any child being locked in a closet, as we know happens not only rarely, is just sickening. I kinda want you to make a video on this topic that can go viral on YouTube… like that guy with the son who was being taunted by his teachers. I saw that over and over and over again for weeks, everywhere, and it had to go a long way toward making people aware that this abuse happens.
    Anyway, rock on Lexi, don’t ever stop! xo

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  10. My heart aches for you and your son. I feel you need to name the teacher so others are aware of her practices. Shame on her and shame on the school districts that allow her to continue teaching. There are techniques that are taught for working with autistic children. Obviously, she missed that course.

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  11. You should name the teacher that did this to assure that other parents are aware of her actions prior to putting their children in harms way. This is unacceptable. There are techniques that are taught when dealing with autistic children. Obviously, she missed that class. This is sickening.

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  12. I know it is a mute point, that, it is just plain sad. After, all we have to worry about, that “THIS” is even something we have to worry about at all, just baffles me.

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  13. My son got to where he was screaming and crying about going to the school for the handicapped and I started wondering what they were doing to him there. So I took him out and put him in normal school and if they had a timeout it was sitting in a normal chair. This is wrong to be able to put a child in the closet!!! I sure hope that never happened with mine. MIne couldn’t tell me either at that point, but his whole behavior had changed and I knew SOMETHING was wrong….

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  14. My own S was improperly restrained in the 3rd grade by a bus driver. The driver had picked up this little 50 lb child and DROPPED him into the seat and held him there. The whole incident was recorded on the bus camera. The district claimed the bus driver was WITHIN HIS RIGHTS to restrain and abuse my child for causing a problem on the bus. My child’s RIGHTS were never mentioned. It DOES happen and we need the laws to protect our kids.

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  15. Thank you for sharing this. Reading it, I can sense your courage and resolve. I have a nephew whose son displays a similar non-verbal trait. But the difference is he loves to go to school. I hear that he is now slowly picking up a few words.

    Shakti

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  16. Children with ADD are not the only children who feel more comfortable when they know what is coming next. In general, people feel better when they are in a familiar environment with built-in routines. Even adults want to know what the meeting is going to be about, when they’re going to get their next break, how long they’re going to have to complete the project, and so forth. Imagine how you would feel if your boss said, “I’m not sure what day school will start this year. I’ll just give you a call a couple of days before.” You’d probably feel very uncomfortable with the idea. You need to know when you’ll be expected at work. You need to plan ahead. You’ve got things to do. The feeling of being left “hanging” without information on what’s happening next can be incredibly frustrating. However, that’s how many teachers treat their children.

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