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