Five years ago at this time Zion was in public pre-school.
The principal, Mr. Smith, had an incredible spirit of advocacy for children. I respected him greatly as an educator. He pulled me aside one morning after I dropped Zion off at school.
Mr. Smith told me that due to Zion’s behavior, there was not really a good fit for him in the public school system. Zion’s behavior would keep him out of the typical classroom, but his intelligence would not be challenged appropriately in the special education classroom.
In a sense, Zion was locked inside of himself. There were ways to assess his intelligence, so we knew that little boy was in there. We just didn’t know how to get him out.
He wasn’t speaking.
Or using the restroom.
Or making eye contact.
He was like a really cute little wild animal.
With incredibly long eyelashes.
Mr. Smith suggested that I speak with Zion’s psychiatrist about medication, and the variety of options available to us at that time.
Now let’s be clear here, I hate prescription medication. I had absolutely zero interest in putting that crap into my son. But I also used to think that vaccinations gave my son Autism, so I was willing to take the chance that I might be wrong about this too.
So I started researching, as I always do, being the nerd at heart that I am. I discovered a laundry list of meds available to children with Autism. The side effects were like something out of a scary movie. I cringed and moved on.
Then I discovered something called ABA (Applied Behavior Analysis) Therapy. This is a form of conditioning that modifies behavior. It is the same type of training used with dolphins. The therapist notes the reaction of the patient and his behavior to his environment, and can use that information to modify the patient’s behavior.
Come here cute little dolphin-poo, do a water-top back fin-spring, get a fishy. That’s how it works.
So in lieu of tossing sardines at my son, I decided to ask Zion’s psychiatrist what he thought of an ABA center instead of public school. He thought it was brilliant, but wanted me to also put Zion on Risperdal and Focalin. I called Zion’s pediatrician to get a second opinion. He agreed. I was not thrilled about the meds, but I agreed to put Zion on them.
(NOTE: Moms, never ever ever doubt your gut. Never. YOU are your child’s advocate. If you don’t like something, don’t do it. Conversely, if you believe strongly in something, push for it.)
I found an ABA center, and withdrew Zion from public school. His teachers and principal begged us not to do it, but I felt it was the right move.
Fast forward 4 years. Zion had grown incredibly. So we attempted to transition him back into public school. During the course of our 4 year absence from public school, our district had developed something called a functional classroom. This is a place for children whose intelligence and behavior are misaligned, sort of a middle ground between a typical and special education classroom.
This is where Zion was placed.
Zion’s ABA center was amazing. They prepared him for the transition. They set up a mock classroom in the center to teach Zion what it would be like in public school. They even went to the IEP meeting with me, and offered to attend class with Zion to assist him. The public school gave only 2 weeks for the ABA center to be in the school. With such limited hands-on guidance and supervision, Zion soon discovered how much control his behaviors had over the public school environment. Any amount of destruction, nakedness, and urination would get him removed, restrained, or even suspended.
It was a disaster.
The most frustrating part for me, is that I felt completely unheard by the public school. I am this child’s mother. My insurance provided the ABA therapist, at no cost to them. The therapist’s expertise and supervision would have set my son up for success. But due to the district’s blatant arrogance and unwillingness to admit that not every child fits into 1 of their 3 jello-mold classrooms, Zion’s transition did not work.
We had to walk away from the teachers and students left bobbing in the wake of Hurricane Zion.
Our previous ABA center took him back immediately. But to add insult to injury, Zion took those learned behaviors from the public school back into the center environment. This went on for 8 long months.
I started to have the feeling that I should remove Zion from the center altogether. Not because of them, but because of him. I felt that he was associating those public school behaviors with his Center, and that it might serve him best to remove him. I researched this and considered it for months, but I felt such immense grief and guilt because of all the Center had done for my son and for my family. People were hurt by our exodus, and that makes me very sad.
But at the end of the day, I had to muster the strength to do what I felt was right for Zion. I removed him to an isolated environment, where there are no other children. He can strip down and go bare-pickle, and it really has no impact anymore. He is currently being assessed by a BCBA-D, (ABA therapist with a PhD) who has years of experience unraveling the behaviors of children and adults with Autism.
Like a big Zion Rubik’s Cube. As a kid, I could always solve one side of the cube. Sometimes if I was really diligent, I could solve two at the same time. But I never got more than 2 sides. I don’t know anyone personally who ever solved all 6 sides.
My team over the years has solved many sides of Zion’s cube. It has been a collaborative effort. Some people solve one side, they pass it off, and another person or team solves another.
Zion started out like this:
My goal is for him to end up like this: