April is Autism Awareness month and I am here to spread awareness to all of you awesome people reading this! I am not educated on the topic and the only thing I can provide are experiences. I started this blog to share my life and inspire people. Earlier this year I wrote about how I wanted to overcome my fear of exposing my life to the internet basically in hopes that ONE person will benefit from me sharing my life. So with autism awareness month here I am going to share my life experiences of having a child with autism.
Jay is an in between-y. I wouldn’t say he’s high functioning but I wouldn’t say he’s an obvious autistic child; he’s an in between-y. Jay began early intervention services in April 2015 and wasn’t diagnosed until July 2016. Weird…right? I don’t know how people are properly diagnosed with autism but from what I’ve seen its like a magazine quiz. The parent is asked about a hundred questions while the doctor fills in bubbles according to the answers. At the end you either fall into group A or B. Autistic or not. It’s the most frustrating thing to see your child as “kind of” autistic. He BARELY tips the scale. This has made my life as his advocate the most frustrating job I have ever had!
I have been trying since July 2016 to get Jay more services. I have talked to other autism parents to see what they’ve done. I have talked to my insurance, I’ve talked to workers, teachers, everyone and anyone to help me. The worst part is that no two people have gone the same route. Jay’s doctors can’t seem to effectively communicate with one another. The insurance people just DON’T KNOW what they’re doing (because I have called on multiple occasions and have gotten a new response every time) It’s now April 2017 and I still don’t have ABA or speech for Jay besides what his school district provides.
It FEELS like he gets pushed on the back burner because he’s not an extreme case of autism. He’s an in between-y so why rush? He does okay compared to other [autistic] kids, “he’ll be fine.” I lost nine precious months because people don’t see him as a big deal. It’s not fun being a pain in the ass to everyone but I HAVE TO DO IT. It’s hard to keep the motivation because people are constantly telling me “he’ll be fine” like it’s supposed to comfort me somehow? They say it as if he’s going to grow out of his autism. It’s one of the WORST things to tell me. I KNOW he will be okay, I’ve always known but I don’t want him to FINE I want him to be GREAT I want him to SUCEED!
I pray that someday there are easily accessible ways to receive therapies for ALL kids on the spectrum. Time is a precious thing and it should not be wasted.