The box that autism lives in…

I wrote this a year ago on Facebook but never published it or made it visible.  I just wanted to remember my thoughts from that period.  It showed up today in my memories and I decided to share it here.
Update: I no longer feel sad or angry about Jase’s autism.  I feel much more able to help him, work through the issue and I understand his triggers (for the most part).
I am angry about the lies that were told to me when they said vaccines were safe and would bring no harm to my child.   That infuriates me to no end.  The last 2.5 years have been dedicated to bringing awareness to other parents who’ve been lied to.  My next 20 will be spent doing the same thing.

2 weeks ago today I sat in the doctor’s office at Children’s Hospital. She told me that Jase was amazing, brilliant, in fact, he scored higher than any 2 or 3 yr old they’d ever seen. A typical “advanced” toddler scores an average of 100 on the tests they administered the week before. Jase scored a 145. Unheard of she said. I was proud inside. I knew he was a little genius. He amazes Scott and me every day. She continued to talk and I knew what was coming next, I could see it in her eyes. “Jase also has autism.” I looked away. I felt my heart break a bit. To be perfectly honest, I knew already. I’d told Scott 6 months prior. Mom’s just “know”.
I found myself tuning out to what she was saying and thinking of all the things that “autism” means to other people. What would they think once they heard he has autism? Would that explain his brilliance? Would it explain his meltdowns at church? Would people see him differently now? Feel bad for him? Treat him differently? Would he face bullies? Those thoughts were too much for me to handle and I could feel the tears slide down my face.
The doctor recommended 25 to 30 hours of therapy per week. I thought to myself, who can possibly do that and live a normal life? And why would my baby need 25 hours of therapy? She explained all of the reasoning and to be honest, I don’t know what she said. I am happy I recorded the conversation because I will need to refer to it later. It’s later now but I still have not listened to it.
I called Scott when I left the doctor. He sounded like someone knocked the wind out of him. I guess my Google Ph.D. and mommy diagnosis 6 months earlier didn’t convince him. I will be honest. When I heard the disappointment in his voice, I was angry. Strange isn’t it? I began to argue Jase’s case, prove to his dad that there was nothing wrong with Jase and he was the same baby he was 10 mins ago. Of course, Scott was feeling the exact same sorrow and having the exact same feelings I had an hour before…..but somehow hearing him wonder how things would change made me feel so emotional that the only emotion I could muster was frustration.
I am sitting beside Jase as I write this. He’s solving puzzles on the iPad (games geared toward 5 and 6-year-olds) and telling me about each animal as he solves the geometrical puzzle and watches triangles and squares turn into Hummingbirds. He’s happy, engaged, and brilliant. He stops every now and again to come over and kiss me or to say “I’m so smart?” And I reply “Yes, you are so smart.”
We won’t label Jase as “autistic” or a “genius” – those things aren’t who Jase is. We won’t ever let those things limit him or define him. I will continue earning my Google Ph.D. and talking Scott’s head off about cures, diets, activities, methods and everything in between.
Above all of this, we will pray.
When Jase was dedicated to the Lord in May of last year, we had to pick a scripture that would be displayed on the screen behind us. We chose Jeremiah 29:11 “For I know the plans I have for you,” declares the LORD, “Plans to prosper you and not to harm you, plans to give you hope and a future.”
I’d say that crushes any box we try to fit him in.
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