On Self Awareness

Ever since Jackson was diagnosed three years ago, I have made it my mission for him to know that having autism does not make him broken or damaged or sick.

Shortly after his official diagnosis, I had a phone conversation with one of the amazing administrators from his school. Always observant, ever curious, my sweet six-year-old said "Mama, why were you talking to Mr. S.?" I explained that we were trying to make sure that we could figure out a way to get him markers in art class that didn't "hurt his brain" (as he explains it). He looked worried...like maybe he was in trouble.

I said, "You've been sitting in rooms hearing a bunch of adults using words like autism and Asperger's and sensory but you don't know what those things are, huh? Are you curious about this?" He nodded, saying he didn't understand any of it. So, I took that as my naturally occurring cue to have a calm conversation with him about his diagnosis. (Brent and I hadn't even discussed when or how we were going to do this; but there it was in front of me.)

I had recently purchased an extraordinary e-book called Understanding Sam and Asperger Syndrome by Clarabella van Niekerk and Liezl Venter. We cozied up on the floor and asked if I could read a special book; he agreed. I explained to Jackson the character in the book might remind him of experiences he has and I asked him to let me know when he heard those things. And we read. And his eyes widened when he learned that this little boy in the book sounded so incredibly similar to him: Sam doesn't like his food to touch; Sam covers his ears when things are too loud; Sam likes to talk about things that interest him...a lot. More and more Jackson got excited as Sam's experiences mirrored his own. He exclaimed, "That's me too, Mama!"

The beautiful piece about this book is that at its conclusion, van Niekerk and Venter take the opportunity to explain what life looks like for Sam after his diagnosis: that he visits doctors to talk about his Asperger's; he wears noise canceling headphones, etc. And it normalized the experiences for Jackson...but for me as well.

Assuredly, Jackson said, "So, Sam's like me, Mama?" I said, yes, that he has been diagnosed with autism and that it is just how God made his brain different. Going on, I explained that it makes some things more difficult (like loud noises), but, some things much easier (like math).

This normalizing approach has been my gentle and real way of explaining to Jackson that he is not damaged or broken or unimportant. Brent and I both have reinforced to him that yes, his brain is different but it doesn't make him less (thank you, Temple Grandin).

We've taken that approach with closer friends who have witnessed meltdowns while having play dates. Educate. Explain. Normalize it for them. Because, when we teach about how our brains are different, not less, we gain empowerment and understanding and empathy. Always working towards empathy. Jackson can feel safe knowing that his real friends will still play with him and love him, even when he has a hard time working out a situation with them that wouldn't be a "big deal" to other kids. So, we read books like Understanding Sam and All Cats have Asperger's by Kathy Hoopmann with them. We answer questions. And, as kids do...they run off and play after wards.

I tell you all of this because the other day, there was a moment that was so huge. It gave me goosebumps and still does. Three years of conversations and encouragement and hugs. Three years of reinforcing that God knew what He was doing when He created Jackson, brain wired differently and all...that lead up to this moment.

Jackson and I were having lunch in a cafe the other day. I had handed him my Let's Chat Conversation Ring and told him he could ask me anything. It was his turn to pick what we talked about. He asked, I answered and then volleyed the same questions back to him. (Always teaching, always working on reinforcing those conversation skills...) So, we got to this one question: Proud Talent "What skill, talent or trait are you most proud of?" I proclaimed my "stupid human trick" of being able to play a recorder with my nose, making Jackson laugh and cringe all at the same time. But, I didn't expect what came next. I asked him the same question. And his response? "Having autism." 

Let that sink in for a moment. Because it still gives me chills. Of all of the character traits and skills and things that my sweet boy is amazing at, could be proud of, the thing that he is THE MOST PROUD OF is having autism. This boy, y'all. He takes my breath away without even realizing it.

Because here's the thing for both Jackson and myself and everyone else on the spectrum: Autism is as much a part of who we are as every other experience and characteristic that God has placed in our lives. It informs nearly every decision that we make, conscious or not. And, there are plenty of difficult days that I shake my fist and go to blows with God over why me or why Jackson when the moments are so difficult and overwhelming to bear. 

But then, there's Jackson. So simply declaring last year on the first day of school when it was his turn to talk about something about himself and what he's excited for, saying "My name is Jackson. I have autism. And, I'm excited for lunch." Just. Like. That. Not because it is an excuse or a crutch. Not to try to get away with things. Not even to get special treatment or attention. Because it is just who we are. How God made our brains. 

And in the same vein, Jackson's talent that he is most proud of is "having autism." Because, well, why shouldn't it be? It makes him, and me, pretty ausome. 

Note: Anytime I mention my son, Jackson, in a blog post, I read it with him and ask his permission. I ask for his feedback and make necessary changes to make this place be a safe place for him too.