Thursday, November 01, 2018
No One's Normal
I'm having a lot of BIG feelings today... mainly about this little guy, who is not this little anymore.
I chose this picture because it's one of my all-time favorites of him. In this picture, we were at the zoo and he was about 18 months old. He had some quirks then but no big red flags to tell us what the future would hold.
Fast forward two years and, after a difficult journey with four different clinicians, he was diagnosed with Austim. It was a word I had been praying would not be part of our family. I was scared of that word. It was a bad word in my mind, because I thought it meant he was broken. Each year after his diagnosis, when Autism Awareness Month would roll around, I pretended like it didn't apply to us. I guess I was in denial.
According to the site, Autism Speaks, Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication. Both genetics and environment play into the development of the disorder, and 1 in 59 children are affected by it.
Benj's particular diagnosis, formerly known as Asperger's Syndrome, is a subset of ASD. This type of high-functioning autism is a blessing and a curse for him. He has so "little" autism, most people don't even notice or realized he is autistic. Sometimes Dave and I even forget that he has it, as we interact with him. But because he seems so normal, it makes it hard to understand when he encounters an issue - and how he reacts to it. His biggest challenges are understanding nuanced language or nonverbal communication, sensitivity to light, tastes and sounds, sudden changes in schedules, and at times, he suffers from anxiety and depression.
There is no hard and fast rule or handbook about when & how you should tell your kid he has Autism. I promise, because I looked it up. Basically, everything I read said you should tell them when they're ready. In the past, I tried to dodge the discussion, mainly because I didn't know how to bring it up and how he'd handle it. I didn't know what 'ready' was for him - until tonight.
His school does an amazing job of teaching kids about Autism. It's one of two schools in the district to house an Autism program, so all of the teachers receive special training. And all of the kids receive education each year so that they can understand the kids in their classes that struggle with it.
Two weeks ago, the Autism specialist gave a presentation about Autism to his class. It's an awesome and sweet animated explanation of Autism, called "Amazing Things Happen". The big idea is that we are all different. After watching the video, Ben told the teacher he thought there was autism in his family; he said, "I think my sister has it. My mom too! Maybe even I have it."
Tonight, he had a pretty massive meltdown because I told him he had to do homework before he could play video games. This is not an uncommon issue in our house, but tonight's reaction was particularly bad. He threw a bunch of things, tried kicking me, and actually slapped me. The last was the final straw; he was swiftly sent to his room to cool off. When he came down 10 minutes later, he apologized, hugged me and then, simply asked, "Do I have autism?".
Dave and I were planning to sit down together and talk with him, but when Ben asked, I knew I couldn't lie or skirt the issue anymore.
We sat down on the couch and I grabbed a very soft throw blanket to snuggle with him, and we talked. It was actually a pretty good conversation. He had questions, which I answered as best I could. His eyes started to well with tears, until I mentioned that kids with Autism have super powers - many of them are super good at math or computer programming. He wiped away his tears, and his eyes got really big. And then he asked, "What do you think my super power is? Do you think it's reading or maybe soccer?". I told him I didn't know, but I said we'd find out soon enough.
And he was totally ok with that.
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