The year was 2008.
I was working nights part-time in the emergency room so I could spend my days with Zion. He was at the height of his tantrums and screaming fests. He was going to special needs preschool half-day, and I was spending the other half of the day utilizing therapies with him that I had learned from a program called First Steps.
I was trying my best to fix my son.
But it wasn’t working.
I would work with Zion for hours. He would sit, in a stoned stupor, as if I’d just given him a joint instead of some building blocks. He would stare off into space for exorbitant amounts of time, as if I weren’t even sitting there.
Sometimes I would say his name 10, 20, even 30 times before he would look at me.
And then just as soon as he recognized his own name, and acknowledged my face, he would launch into bouts of high-pitched shrieking.
It was wearing me down.
I guess I knew it was coming. I could feel the volcano of frustration and hopelessness welling up inside of me for months.
We were in our living room, and I had asked Zion to stack 5 building blocks. That simple request escalated into a tantrum. He was screaming, rolling around on the floor, punching himself in the face….
I sat there with my face turned away, as I had been taught to do.
I tried hard to swallow the lump forming in my throat.
I felt the hot tears welling up in my eyes.
Then he crawled over to me, and started pulling on my pants while he was crying and wailing. And that was the moment.
I dropped to my knees in front of him, and I grabbed him up in my arms. I held him tight and I screamed, “Get out of my son! Get OUT! GETTTTT OUTTTTT!“
I fell to the floor and sobbed.
It scared the crap out of Zion. It scared the crap out of me.
I’m not even sure who I was talking to. Perhaps the autism. Or a demon. I was commanding something to leave him.
That was the day I decided that I couldn’t be Zion’s therapist anymore. I called my boss and told her that I wanted the clinical training to work full-time. She quickly obliged. I decided the fees for special-needs daycare were worth the trade of my sanity.
Soon after I finished my training, I was working an overnight shift and talking with a young lady named Jen. Both of her young boys had recently been diagnosed with autism, and they were receiving something called ABA therapy. I told her that I had researched this before, but that our insurance didn’t pay for it. She informed me that if I chose the more expensive plan, it would pay for it 100%.
We enrolled 3 weeks later.
ABA therapy found a way to teach Zion. This individualized therapy reaches around the autism, and teaches the child on his own learning terms. ABA has been able to teach Zion in ways that I never could have dreamt up.
Public school was just not a good fit for Zion. I was encouraged to medicate him. I was called daily with reports that he was being uncooperative and would not walk in line. (shocker) His speech therapist very snarkily told me during an assessment one day that he would never speak in sentences.
Oh. No. She. Didn’t. Ah but yes, she did.
I hated her for years for saying that. Even though for years Zion didn’t speak.
It’s true that Zion has a unique way of communicating. He has progressed to the point in the past 6 years, that now most of the time when he speaks, it is understandable. He just sounds like Yoda:
Good day mama have. Translation: Mama, have a good day.
Ride Rebecca’s car later Friday. Translation: Will Rebecca be bringing me home today?
Can I get take out to breakfast? Translation: Can we go to McDonalds and get an egg mcmuffin, instead of that healthy slop you make for me at home?
I speak his language. As does everyone in my family. And his therapists.
But most other people do not typically understand what he is saying.
You see, all the words are in his head, they are just all mixed around like a jigsaw puzzle. His therapists are currently working with him to straighten those words out to make sentences.
So here’s what happened Friday morning that made my heart nearly burst.
We arrived at his ABA center. We got out of the car, and Zion turned to me and said, “Ride Rebecca’s car later?”
I didn’t answer.
He said it again. “Ride Rebecca’s car later?”
I still didn’t answer.
He didn’t say anything for a minute. I could see his wheels turning. Then he said:
“Who is bringing me home today?”
(cue Hallelujah chorus)
Is this real life right now?!
I grabbed him and hugged him tight and said, “Rebecca, buddy. Rebecca is bringing you home today. And I am SO PROUD of you!”
He giggled and wiggled with joy.
He was proud of himself, too.
So, in summary:
- Never ever ever ever ever give up. Ever. EVER. EVER.
- This is the story I will forever tell when people ask me why I work so hard to pay for ABA therapy.
- Changing my role to Zion’s mama instead of Zion’s therapist has made me a much happier person.
- Zion’s preschool speech therapist can suck it. Sideways.
When Zion was 4, I screamed at something in him to “GET OUT.”
And as it turned out, it has.
SO MUCH has come out of this kid. And if I have anything to say about it, there is much, much more to come.