Tuesday, February 25, 2014

Bark Chips


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.




Friday, January 20, 2012

Inequity


Every time I watch the show "House Hunters", I get this sick feeling, deep in my stomach.

Don't get me wrong, I still watch the show. I enjoy looking at cool houses and comparing all the different designs, prices, options, layouts, etc. Yes, I'm "that person" who will get in the car and go on a drive for the single purpose of looking at cool houses and daydreaming about what they might look like inside. If the front curtain is open, I might slow down so I can sneak a peek into the warmth and beauty of the cozy interior. Yes, I'll even snatch a flyer if a house is for sale, just out of curiosity.

However, a few days ago, in an attempt to express where that "sick" feeling comes from, Shawn and I created the following video by clipping together 2 different shows:



The feeling?
Despair over the utter inequity of our world.
Longing to share whatever we possibly can.
Frustration in knowing that it will never be so simple to just "even things out" and share our wealth with the poorest of the poor.
Desire to never reach a place that is so "high" that we would take for granted all the "things" that we have. Or even, God forbid, complain about them.

Every morning, I wake up with a roof over my head to keep me warm from the cold, or cool from the heat. I not only have this home to shelter me, but this home has soft carpets. This home has a big, plush, cushiony couch to sit on. This home has a super comfy bed with 2 blankets and a nice warm down comforter. This home has clean, fresh, untainted water that I can enjoy, drink, bathe in or even waste whenever I feel like it. This home has things hanging on the walls to make it prettier: pictures, painting, art. Things that serve no purpose at all other than something nice to look at. This home has not only "just enough" food to keep me alive, but above and beyond that - I have extra food to eat when I'm bored, when I'm full but wanting a yummy dessert, or just craving something. And if that's not enough? There are 2 grocery stores, 15 restaurants, and 5 coffee shops filled with things I "need", less than ONE MILE from my house - easy walking distance. But I don't need to walk anywhere - why would I when I have my nice little car to drive around in?

I am not:
Digging through the garbage dump to find rotten food to eat for my next meal, or to try to find a scrap of something that might be sold for a few cents.
Watching my precious children run around with filthy, cut, bleeding bare feet because I can't buy them shoes.
Sending my infant child away to live a life of scavenging through the dump because it would be a "better" life than what I would have had to offer him myself.

I am also not taking my "things" for granted.

Friday, December 2, 2011

Misunderstood


10 things I wish the world knew about our Charlie:

1. Just because Charlie doesn't look you in the eyes when you're talking to him doesn't mean he isn't listening. He hears and remembers every word you are saying, trust me.

2. Charlie is extremely funny, creative, loyal, loving, honest, and unique. You may never see this, though. He hides it very well when he is out in the "big bad world".

3. Charlie deals with so many obstacles on a daily basis: bright light hurts his eyes, loud noises hurt his ears, he can't stand to be cold or to have his head uncovered outside, he tires easily and doesn't have the endurance for sports-type games, he's extremely afraid of dogs and people in costumes, etc. Charlie is sensitive to so many things that most other people wouldn't even notice. He has worked so hard to overcome these obstacles. So hard.

4. Charlie is not simply "lazy", he has hypotonia (low muscle tone) - something he was born with. He tires easily and prefers more sedentary activities because of it. He has been in therapy for this.

5. Yes, Charlie may be clumsy, but this stems from issues with his gross motor skills. Therapy for this, too.

6. Charlie is not simply "picky", he has sensory issues that interfere with his eating. We are working on this, and have been for years. And, yep, more therapy.

7. Charlie is cherished and adored by his family and those who are close enough to get inside his little world. In turn, he is astoundingly loyal to his "people". Charlie's loyalty is one of his greatest and most poignant characteristics.
The way Charlie loves and protects his baby brother is like nothing I have ever seen.


8. Charlie does not understand a lot of the ways that people relate to each other and are "social" with each other. He is often oblivious to social cues and can appear very rude or uninterested. For this, I apologize. It is something we are constantly working on and one of my biggest fears for him is that he will never "get it". Be patient and persistent when you try to interact with him. Once you finally achieve that "connection", you are in and he will love you for life, I promise (see number 7!)

9. Charlie sees the world in such a unique way that every single day I am surprised, delighted, confused, frustrated, enlightened, sad, amused, and inspired by the words that come out of his mouth.

10. Charlie has Aspergers Syndrome.

I constantly find myself caught in this paradox between how completely amazing Charlie is and the need I feel to apologize for the way he is. I haven't known what to do with this. And mostly? I still don't.

All I really know is that Charlie needs to be loved in a unique way. A way that will fit into the grooves of who he is - grooves that follow very different paths and patterns from the world around him. If you take the time to step outside of "normal" and follow him down those paths and find him there and love him there, I promise you won't be disappointed. In fact, you might not want to leave.


Friday, November 4, 2011

Why wine tasting isn't for lightweights...

Drew was working on the big "Homemade Wine Project" with Shawn.
Maybe the fumes got to him?

Monday, October 3, 2011

Milksharing


I have been wanting to write about this for a few days now. But I haven't been able to formulate the words to express my experience: how not only has it provided much needed nutrition and health for Drew, but how deeply it has impacted ME as a person to be blessed so abundantly by the generosity of complete strangers. I have been touched by it in such a deep, personal way that I felt like a "blog post" would never do justice to what has happened. However, I just have to try. So, here goes...

My breast milk supply is very, very low. This happened when Charlie was a baby, and has once again happened with Drew. Now, I had written a whole bunch about how sick Drew has gotten from the formula and how the formula that he was taking is made of mostly corn syrup and "isn't that horrible?" and how he is only healthy when he's on my breast milk which I can't provide him with and how hard I have tried to increase my supply and blah blah blah. But you know what? I deleted it.

Because what I really wanted to say is how incredibly thankful I am for what has happened. For the solution that basically fell into my lap on the very day that Drew was at his sickest, and I was at my most desperate to find a solution for him. For the incredible, amazing, giving, caring women that I have come into contact with over the past few days. So, here's how it went down:

A few days ago, I was reading my friend Rachel's blog. She was writing about something called "World Milksharing Week". Something I had never heard of before. Basically, these women who are nursing and have extra milk they don't need find other women who have babies and, for one reason or another, can't provide enough (or any) of their own breast milk for their babies and, well, they SHARE the milk! Brilliant! I never would have thought that such a thing existed! I was blown away. I immediately commented on Rachel's blog that man do I wish I knew someone who could share some milk with me!? Moments later, I get a text from her saying she can probably hook me up. I texted her back asking how much this whole thing's gonna cost (because I'm thinking this is gonna be spendy...) and she says, "It's free, silly!" What? Not only that, but she's got 50 oz of frozen breast milk in her freezer that she will give me for Drew to have while we try to track down more for him. What?! She also shared with me some links to pages on Facebook where I could find some "donor mommies" and also a website where I can pay a small donation fee and get on their forum to possibly find more milk donors. Which I did. Over the next few days, I came into contact with about 5 or 6 different women, all offering me their milk for Drew. One of whom is a surrogate mom (a beautiful thing all it's own), who is pumping milk for the baby she gave birth to in August, and has extra to share. What an amazing person. Not only did she sacrifice her body, her comfort, her lifestyle, for this little baby, but now she is pumping milk for a full year to provide for him! Wow. She has since contacted me to tell me that as long as I need more milk for Drew, she will share hers with me. Wow. Wow. Wow. I am so struck by this. We now have about 500 ounces of breast milk, from 4 different women, in our freezer to feed our precious little guy.
Drew is feeling SO much better since switching to 100 percent breast milk. He is like a different baby now. Happy, lots of cooing and babbling, sleeping through the night, the diaper rash is gone, along with the puking and the nasty diarrhea! And for that I am beyond grateful. I feel like I want so bad to repay these women. But how do you repay someone for selflessly giving your baby (whom they have never even met!) the very best start in life?

Here is a link to a post that Rachel wrote about our experience.

I really wanted to write more, and I wanted to write it better. But I really need to go to bed before the little tiger wakes up again wanting some of that good milk! So I'm just gonna hit "post" and hope I got the important parts out right. 'Night all. :)