I've often found it difficult to write about Charlie's autism. Or rather, my experience with Charlie's autism. All at once it is so deeply painful...yet so unexplainably beautiful. It can be utterly heart-wrenching, and yet incredibly heart-warming. It's such a contrast that I often fail to find the words to adequately describe it. It's so unimaginably bittersweet, this experience of being an "autism mom". Truthfully, it is much more often sweet than bitter. Yes, there are moments, days or weeks where the bitter can seem to outweigh the sweet. But it's almost always the other way around. At the end of the day, after it's all accounted for - the good and the bad - what's left is just a heaping handful of pure sweetness.
So I'm going to tell a story, to try to help explain the contrast.
I spent the first few months of Charlie's pre-school experience finding bark chips at the end of each school day. A few bark chips in the back seat of the car. A bark chip in Charlie's pants pocket while I was doing the laundry in the evening. Two or three bark chips in his coat pocket. Bark chips in the bottom of the dryer when I pulled out the warm clothes. A bark chip sitting in the middle of the living room carpet, just waiting to be stepped on. It was a mystery to me, where all these bark chips were suddenly coming from! Well, finally it dawned on me, "Maybe I should ask Charlie about the bark chips!" Light bulb moment! Hello, mom! So, I asked.
The conversation went something like this:
"Charlie. Where are all of these bark chips coming from? Why do your pockets always have bark chips in them?"
"Well, mom. When I'm on the playground and I think of you, I put a bark chip in my pocket and I hold it in my hand and think about you."
I could feel tears prickling at the back of my eyes as I thought about Charlie on the playground. Often times, I would drive up to the pre-school during recess just to check on him. From the parking lot, there was a perfect view of the little fenced-in, outdoor play area. Each time holding out hope that I'd pull up to see him running and playing with the other kids. But no. Every single time I pulled up to observe him, there he stood. Alone in a corner of the playground, standing on a plastic green balance beam, hands in his coat pockets, staring out at the other kids. Shifting from leg to leg. Balancing between the two. Alone.
A few weeks after the "Bark Chip Mystery" conversation took place was when Charlie was officially, "medically" diagnosed with Aspergers Autism. He was 5 years old. We were working with a team from the ESD to get a possible "educational" diagnosis of autism, in case he might need support the next year when he'd be starting kindergarten.
One day, an autism specialist came to the pre-school to evaluate Charlie. She was working with him at a table, trying to get him to play some games with the other kids in class (to no avail). She had given me a survey to fill out and leave with her before I left the school, so I was planning on going into an empty room in the building to fill it out. I told Charlie, "Okay, I'm going. I might see you again, but I might not." Meaning, of course, I might see him again before I left the school, but he might already be in a different classroom by the time I left.
Fast forward a couple hours. I was shopping, but something was nagging at me. I had that sick "mommy intuition" feeling in my gut. I just had this terrible feeling that something was wrong with Charlie. So I drove up to the school early (during recess time) and figured I'd check on him and then just wait in the parking lot until school was out. I pulled into the parking lot and looked across to the play area. There was Charlie, standing alone on the green balance beam, looking off into the distance, out into the parking lot, away from all the other kids. Tears were streaming silently down his red face. I got out of my car and went up to the building. I asked his teacher what might be going on, why he was crying, and she said that she thought Charlie had looked on the verge of tears all day, but every time she had asked him if he was crying, he had told her no. I gathered up my sweet boy and the overwhelming look of relief on his face was undeniable. "MOM", was all he said, along with a huge sigh. Such a big sigh you could almost believe he'd been holding his breath all day.
After we got in the car, I asked him what was wrong. He said, "I thought I might never see you again." You see, Charlie takes everything (and I mean EVERYTHING) extremely literally. So when I told him, "I might see you again, but I might not", he thought he might LITERALLY never see me (his MOM!) ever again. He had just sat through 2 hours of school, thinking he may never see his mom again. Oh, this time the tears were mine. I cried and cried all the way home, thinking of him sitting in school, quietly forcing back tears, thinking I might be gone from his life forever, just like that. That hurt my heart so deeply, I'll never forget that pain.
That night, as I was sorting through the day's laundry, I was holding Charlie's pants and they seemed extra "lumpy". I reached my hand inside the left pocket. Filled, and I mean, STUFFED FULL, with bark chips. I reached into the right pocket - yep. Stuffed full as well. Let me tell you, the rivers of tears flowed again. I could just picture him standing alone on the playground, gathering up a bark chip for each tear he was trying to fight back. A bark chip to remind him of my love for him and his love for me.
You see, that's the contrast. There is this sweet, precious, loyal heart that is just filled to the brim with love. But so often that love looks different to the outside world and people miss it. The love is there, trust me it is. But this love just comes out so differently. It doesn't know or adhere to all the "social rules" and the "social cues" of the human race. It beats to it's own drum. I might never have asked Charlie about the bark chips in his pockets. I would never have known that, for him, they represented his love for me. I would have missed it. I would have continued to encounter all these "annoying" bark chips, not seeing them for what they really were: each one a precious little symbol of a love spoken in a different language. I know there are many more things I miss, because we exist on such different levels. It really is like speaking a different language - the communication between us. But along the way, I'm learning some of his language, and I can only hope he's learning a little of mine, as well. I hope that some day, the people around him, all the people in his life, will be able to feel - in a palpable way - just how much he loves and adores them, and understand just how loyal his sweet love for them is. If you wiggle your way into Charlie's heart, you are in there to stay.
So there it is. A little story about bark chips and speaking love in different languages - bittersweet...but mostly sweet.
At the end of the day, my biggest hope is that Charlie's pockets will always be full of "bark chips": little reminders he can hold in his hand, reminders that he is loved and cared for and cherished beyond his wildest imagination.
Because he is.