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.
15 comments:
I love this post. You're an amazing mom and an amazing person, and your love for your kids and family is always right on your sleeve. Keep rockin' it, Mars.
Oh. How I just want to squeeze him! But I know that would probably be a terrifying experience, so I'd settle for a chance to squeeze YOU. :)
Have you considered finding a lamp with a clear glass base that you could put all of those bark chips into? I could see it fitting into a modern/rustic decor very nicely.
What an incredibly sweet story! I may never look at bark chips the same way again!! (I love Beth's idea of filling a lamp base with them!)
God bless you, Marlene and Shawn, as you raise and love your precious son.
Oh Marlene, that is just beautiful. Makes me want to give you a jar to keep on a shelf in your laundry room! So beautiful...thanks for sharing, it's nice to have a window into your world and heart...and his. Keep writing! ;)
WOW (said with tears in my eyes)!
wow, that was the beautiful and powerful heart felt story. thanks for sharing. this short story sheds the light on the joy and special sweetness of having a autistic child. more power to you blessed mother of Charlie! Kazue
What a beautiful story...I had no idea. Peace and many blessings to you all. HUGS!!
Ooh! Ouch. My heart. (in a good way) ;)
I knew you and Shawn were special people when I first met you. And then I met Charlie the day after his birth. Little did I know how God had blessed your home. I rejoice at your writing you've been given a beautiful
vice I'm glad your able to use it. I know it's painful but what a blessing to raise a child who does not see the world like many of the rest of us. We could learn so much by entering in to their rather than forcing them in to ours. The world is the loser. To my knowledge there is a lack of writing like this.
a lot of experts who think they know and try to help. A lot of Asbergers children and adults, but to have such a beautiful example lived out before us is amazing. The world needs you writings. If were ever going to have more Einsteins, Edisons or Gates and many others.Please don't grow weary in writing you heart Charlies Mom and so much more. God knew all along and prepared you both well. Terry
Marlene,
I had no idea. I always loved your gift of writing. Something about the heart on paper just fills me with such joy. I was moved to tears and fell in love with your boy hearing about how he thinks, what he struggles with and most importantly how he loves you. God's blessings to you, sweet mom. No challenge is too tough for you and for our Father that loves Charlie unconditionally.
What a sweet testimony. Tears.
Wow, Marlene, this is a beautiful story. Please keep the bark chips in a jar. They will always bring you smiles, especially when they are needed on the tough days.
I've been following your face book posts for a long time now, a stranger (we have never met though I see you at church), smiling at your words and pix, thinking if Facebook was around when I was a mom this is the kind of thing id post or say. Never once did I see autism. Now I see. All that love....
I think those bark chips are pieces of your heart.
My Goodness Marlene!!!!!!!!! What a truly beautiful and touching story. I personally will never think of bark chips in the same way. Truly amazing story Mars...Truly amazing. It really should be one published. Wow...Wowza!!! That is all I can say.........
I know everyone's experience is different, so I don't belittle yours in anyway when I say I wish your concerns were all I had to worry about. My son has severe autism and verbal apraxia, and I could only dream we had the issues you are dealing with. If his condition doesn't get better, I could be looking at a future where I will have to institutionalize my son. I will die that day if that happens. I say this simply to say praise God for where your son is. He will be fine. Things could be so much worse ( I know first hand 😞).
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