Tuesday, March 19, 2013

Broken

In my tenure as an Autism Mom my heart has broken thousands of times and for thousands of reasons but today it fractured, shattered and fell to the ground right next to my child who was huddled into the corner of a concrete seclusion room at school.

I don't love seclusion rooms but I am a realist and I see the reasons why they exist. This was not my son's first visit to the seclusion room, it wasn't his first time this year. Each time has been because he was not safe to himself or to others and I do trust the staff at his school to make that decision.

I'm not delusional, I know that my son has aggression, anxiety, oppositional defiance, impulsivity and puberty and that is a pretty serious mix.  Lately his biggest "trigger" has been embarrassment. He will act impulsively, realize immediately that he has done something wrong, {missing piece here}, lash out in anger and hit fight or flight. The {missing piece} is Apology and Making Amends. This is the piece he is missing right now and something we are working on daily. He goes straight from:

(bad behavior)---->(realization)---->(worse behavior including aggression)

It is my biggest challenge and number one priority to teach him the step in between, I think it will make him feel better in challenging situations and would have helped deescalate so many situations we have had this year. 

Back to today... why did I find my child huddled in the corner of the seclusion room sobbing? Because today was the perfect storm of instances that started off with the modifications in his IEP not being followed. 

One of our most important modifications is "extra time" for tests, class projects, etc. Today in Math (inclusion subject for him with an aide) they took a 3 minute timed test so important that they put up barriers around each desk and the teacher emphasized that everyone was to be silent. When the teacher called time, Cameron continued to work. His aide told him his time was up and he got mad. She kept talking to him and he put his hand over her mouth, remember everyone was to be silent. A "team" was called to remove him from the class because he was being loud and aggressive yet when a counselor arrived he went with her quietly, holding his test until he got to her office where he sat and continued doing the test. Once he was done and the staff wanted to discuss what when wrong, he was defensive and oppositional. From there the day spiraled out of control with a recess restriction (when he probably really needed the movement), a fire drill (where he took off toward the blacktop to join his class for recess) and finally the seclusion room. 

The school counselor called me to let me know what happened today and I dropped everything and headed to the school to meet with her face to face.  We got into the details, I pointed out that he should NEVER be given a timed test and that there are ways to figure out how far he gets in 3 minutes rather than making him stop work or stress about a timer. We discussed the "elopement" during the fire drill and agreed that today was a "perfect storm" day. She asked if I wanted to see him and I said yes. 

When we got to the seclusion room I heard whimpering and she stopped. I looked at her with horror in my eyes and said, "IS THAT CAMERON?". Before she could even say yes, I had pushed myself into the room and fallen to the floor to scoop up my 11 year old baby and hold him while he cried on my shoulder and held me tighter than he has in years. He was in that cold concrete room, laying on the floor, with no shoes, curled up in a ball and whimpering!! I am sure I would have cried with him if I had not been filled with rage. I got him out of that room immediately and took him in to an office and slammed the door to keep everyone else away from us. He held on to me and cried and begged me to take him home. I told someone to get my other son and we did just that, it was the end of the day anyway. 

I have met Cameron in the seclusion room before, I have calmed him from his own rage. I have assisted him in fixing what was wrong, talked through issues and put a "game plan" in place but NEVER have I seen him broken like I did today. At the point when he STOPPED being aggressive and started SOBBING his ass should have been out of that room!!! 

I don't have to tell you that I am mad. No furious. I'm sure you can hear it in my "voice". I don't have the same trust in this program as I did before. I don't have the same trust with the staff as I did before. I do not feel that they were being malicious but I do feel that they screwed up. I have to come up with how I am going to handle it like an adult, how I can address this without damaging our working relationship when all I want to do is storm into the school and scream, YOU BROKE HIM, HOW LONG DID HE HAVE TO LAY ON THE FLOOR BEFORE HE BROKE???!!!  

I know my child isn't perfect, I know he can be aggressive. I know that he is in a program with behavioral supports for this reason. I do not condone him putting his hands on teachers or staff in any way. But I cannot get the picture of him on that floor out of my head! There is a big part of me that wants to pull him out of school, maybe if I wasn't such a realist and able to see the entire picture I would do just that. A lot of things went wrong today and it snowballed to quite possibly our lowest point in the last 5 years of public school. Some time between now and tomorrow morning I have to bridge the gap between PISSED OFF MOM and concerned parent, put my advocate hat on and fix this in a way where we all can work together again to help Cameron. Because in the end, I can be as pissed off as I want but that won't help him as much as much as being a concerned, educated and well spoken parent. I have 12 hours to get there.....


9 comments:

  1. I am enraged, shaking seeing red rage!! Why is there no bean bag chairs, soft weighted blankets, a compression roller, or swing for him to use to calm himself in that room??? If I ever see my autistic children in a bare room on a cold concrete floor without the VERY necessary tools they need to self soothe themselves til they are able to use their self behavior modification techniques to bring themselves out of an episode I would call 911 cuz they would need to protect the staff responsible!
    Our therapists and teachers set up a corner of the resource room just for my lil girl. Using 2 of the low bookshelves they sectioned off that corner for her, I bought and gave them 3 big bean bag chairs to fill the space, gave them her duplicate softie blankies, a pillow pet, and her time out bag filled with her brush for brushing her arms(sensory), a body sized tube I made from spandex so she can shimmy into it (compression therapy), her pacifier(dentist ordered), a cheap mp3 player with headphones loaded with her "get happy" songs, etc....as well as a large weighted blanket for the really bad moments..she asks to be "burrito babied"....it's big enough to wrap her just like we wrap a newborn baby...this calms her best when she reaches the throw, hit, scream, bite, etc., stage.
    Maybe the staff at your son's school need to be re-trained in the fine art of prevention and non-emotionally abusive techniques in recovering a child peacefully out of a meltdown.

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    1. I just realized that I did not revisit this post last year since it was upsetting to me therefore I did not see your post. I've added an updated comment to the bottom of comments for you and I apologize for it taking me so long.

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  2. I don't have any advice but I'm sorry that happened to him and will be praying for strength and wisdom for you as you advocate for him tomorrow...

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    1. I just realized that I did not revisit this post last year since it was upsetting to me therefore I did not see your post. I've added an updated comment to the bottom of comments for you and I apologize for it taking me so long.

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  3. I cried though my rage as I read this. We have been there too. It is beyond heartbreaking to see your child like that. I am so sorry you had to go through this.
    You know are a rational person. Being able to see that they are trying, even when they make mistakes, is hard. You know what you need to do. And I have found that being pissed off (as long as you are polite and respectful) isn't always a bad thing. Advocate for your child, try to find a away to make sure this doesn't happen again and move forward. It is hard, but we must move forward...for our kids.
    Please let us know how today goes, hopefully your son will be ok and can have a good day.

    ReplyDelete
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    1. I just realized that I did not revisit this post last year since it was upsetting to me therefore I did not see your post. I've added an updated comment to the bottom of comments for you and I apologize for it taking me so long.

      Delete
  4. Oh my gosh. I can't even believe that happened! Although, considering how the school has been acting toward my son, I guess I can believe it. How horrible! I sure hope that's not still happening.

    ReplyDelete
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    1. I just realized that I did not revisit this post last year since it was upsetting to me therefore I did not see your post. I've added an updated comment to the bottom of comments for you and I apologize for it taking me so long.

      Delete
  5. I just realized that I never responded to these comments. I don't think you will be surprised that I did not re-visit this post for many many months (it looks like a full year!). I was able to advocate for Cameron the next day, I walked a fine line between pissed off parent and advocate. I re-worked his entire schedule in the principal's office, we went back over how behavioral psychology works and I cleared my schedule and made myself available to be in the school immediately if any further issues arose. I also continued to document document document as well as requested all reports regarding his goals, grades, incidents and referrals for Kindergarten-5th grade. Remember that he was in a specialized program that was on grade level with behavioral supports so this information was all cataloged. It took some time to compile and once I received the data I charted it (I'm a serious math/stat geek) and had graphics to present at our next meeting showing that in the time he had been in this program his incidence of aggression had increased while his education and goal achievement had decreased therefore this placement was not an adequate one. This is how I was able to remove him from this program and request non-public placement for Middle School which was granted and now he is at the Kennedy Krieger School which is a program that understands his needs better and is completely consistent and accessible.

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