Flipping the Switch

Today I was allowed to stay and observe Big Brother in his preK class at school. Due to the sensitivity of the special needs of the children in his class, visitors and parents are not usually permitted to do this. But today they were having a party and so I was allowed to stay the entire day.

As I write these words, I can feel my stomach churning and I can’t even seem to catch my breath. What I witnessed today was completely and utterly devastating to me as Big Brother’s mother. His actions themselves did not shock me, but rather the magnitude and duration of them did. How in the world have they managed him for two days a week for 2.5 months? I am in shock.

First, when we entered the room he ran to another mom, jumped in her lap and said “go with you.”

Then we sat down for snack time. Out of nowhere, Big Brother jumped up, yelled “poopy,” slung himself on the table sending food and milk cartons flying, and then poured milk over another child’s head, all in the span of 3 seconds. Then he had a complete meltdown for the next 2 hours…..at the library, at the playground….at the party. He layed on the ground screaming and kicking. Nothing helped. Nothing. Then he would kick and hit his teacher, then the aids, then me when I tried to intervene. He destroyed the classroom bit by bit. The only words he spoke were potty words, usually right as he sprung into a rage. He covered the entire bathroom in a spray of urine, on purpose. He screamed, he spit, he raged. Constant raging.

This was considered a typical day for Big Brother. Even with me there. It was as if I didn’t even exist to him.

He was in orphanage mode. You put him in an institutional setting and a flip inside of him switches. He returns to his severely autistic survival mode self and there is nothing that can be done. I watched helplessly as I saw my child act as if he were a ferral child. He was back inside that shell and desperately seeking control. He was gonna show these people who was boss.

So, I guess we stop school for now. His teacher is convinced that he just needs more time. But it’s been over 2 months and there hasn’t been any progress. If anything, I think the situation is getting worse. Big Brother is not an angel at home, but his behavior is maneagable most days. He makes improvements at home and there is a level of respect and understanding about the rules of the house. Although we have tough days, He progresses at home. It’s a much different situation at school.

I know for a fact that to him, there is no difference between school and an orphanage. As he has gained more vocabulary, he has started to express this to us. We really wanted to prep him for kindergarten next year when I have to return to work full time. That’s why we have been pushing school. Otherwise, I’d keep him home forever with me.

I’ve got nothing more.

My heart is heavy and there are no words right now. We’re not sure what comes next.

What I am sure of is that institutionalization is a downward spiral that that not only damages the brain, but the soul as well. I will be praying over Big Brother’s sleeping body tonight for peace, for divine healing. I know it’s not too late for a miracle. I know that someday, peace will come for my scared, hurt child.

*******

Symptoms of prolonged institutionalization in children/institutional autism:

-Rapid deterioration of behaviors to the point where the child exhibits primitive acting out behaviors due to profound attachment disorder and institutional trauma.

-Profound nutritional and medical neglect over the course of years which may mediate body and brain development with the gradual emergence of an organic brain syndrome impairing language, attention and concentration, development of confusional behaviors and deficiencies in memory and learning.

-Complete regression to self-stimulating behaviors such as rocking, head banging, hair pulling, self-injurious behaviors, and institutional language.

-Regression and “detachment” from relative healthy and normal human contact to an “attachment” to others with similar pathology. This “group model” represents survival in an alternate form of social-interaction based on modeling, imitation and developing any type of attachment in order to survive institutional life.

-Improvement in autistic symptoms following removal of trauma and with cognitive and emotional rehabilitation. Resurgence of autistic symptoms upon returning to institutional environment.

taken from “The Tragic Downward Spiral of Institutionalization” by Dr.Ronal Federici

16 thoughts on “Flipping the Switch

  1. Nancy

    OH my dear friend, I too will be praying to for both Avi, and you and your whole family. Not that I know anything, but I think the idea to not do school (yet) sounds like a reasonable one for now. I assume that Avi is receiving “state services” through the school setting? Any possibly of getting services at your home??? there’s got to be something available to him in his home. I think the healing has to start there. We live and die by a predictable schedule and when things go arey, I instantly beef up the “predictability” factor. With school only 2 days a week, maybe that makes it harder for him, not being able to know what to expect (5 days in advance till next school day) and thus less security.
    I don’t know much. But I know you’re doing WONDERFULLY. We do the best we can, with what we have, and give the rest up.

    Reply
    1. hiking mama

      I think you are so right about the 2 day a week thing. I’m just afraid that 5 days would push us both into a nervous breakdown :( Feeling safe is such a big issue for him. I think this is going to take him years to get. Sigh. Thank you for your kind comment, friend. xo

      Reply
  2. Edna

    I’m sorry too, and praying too. Some things are just so hard. . . but you are right not to give up hope, and I think (even as a teacher) home sounds like a better place. And you should be able to get services at home, I would think, also. . . It’s still the middle of the story.

    Reply
  3. Rhoda

    The peace and healing you desire for him will come–he has you on his side whether or not he sees it that way right now. And home is always the best place to heal! Praying for all of you.

    Reply
  4. Rachel Zook

    I will be praying for peace for you hurting sweet boy. May God give you all the peace and patience to work through this time. Will also be praying the answer for Avi’s schooling is worked out. Maybe homeschooling or just going for his therapies???

    Reply
  5. Addie

    Oh, how I relate to your posts so often… I recently did the same thing – got to watch Wallace in his school setting b/c of his class party, and my heart also broke b/c I could say that same little boy that we picked up a year ago – not the one who lives with us now. Its hard being a mother some days and knowing there is nothing that is a quick fix and it feels like time never moves for you.

    I so, so feel for you and wish I had the words that would really be comforting to you. I am so glad that Avi has a safe place now, that he is loved and cared for and can express his feelings too. Hold on tight… hold on tight.

    Reply
  6. Barb

    I am so sorry for you and Avi. It must be so scary for him to go to school. So glad I fought to keep her home for now. She doesn’t have the words and behaviors but I do see her shut down when she isn’t comfortable. Avi has been through more than any child should and my heart hurts for all the children we can’t save. Maybe he just needs more time with you so that he knows you will always be there. I have no idea how long it takes but I am so sorry this has been so hard.
    His video with the balloon is precious. He has really come so far and is such a smart little guy. He is just too cute and he will get there with time. Hang in there!

    Reply
  7. Katherine

    Oh…. my heart is breaking for you all right now. You will all be in my prayers and thoughts.

    If you want to talk “special education” let me know. I have many years of experience at this point.

    HUGS.

    Reply

Leave a Reply