Come On

Here is a song I happened to stumble upon regarding inclusion. It has a Jack Johnson feel to it and completely brightened my day, so I thought I would share it with you.

Come On - Anchorage, AK, United States, 99508 - Fan Community Audio track - Be a part of it!

Not-So-Random Acts of Kindness

I was sitting at my desk yesterday when I saw the UPS truck rocket down the road, trailing a cloud of dry desert dust. I haven't ordered a thing, so I was surprised to see it rattle to a stop in front of our house. The box the driver left on the porch was addressed to Erik. Well, that explains it (not). I wonder what Erik would order if he could. Cookies? Puppies? A box full of wheels?

When Erik got up from his nap, he spotted the box and asked who brought it. I explained that the UPS man did but that I didn't know who sent it. He seemed to understand. I sliced open the tape with a nearby steak knife and opened the cardboard flaps. Inside the box was the cutest little boombox ever. You can even hook it to an iPod, which I had not seen before. There was no information regarding who sent this gift whatsoever.

Erik was suspicious but curious. He asked what kind of noises it would make. I reassured him that it would only make good noises and that I would never need to punch the thing to get it to start, although I crossed my fingers when I plugged it in and inserted a Sesame Street CD, hoping for the best. As it turned out, it's even more quiet than the other one was when it searches for the first track. Even that subtle sound bothers the Mighty Erik Quinn.

So, thank you from the bottom of my blackened heart, mysterious blog reader. I am having a really tough week, and you completely made my entire month. There is music in Erik's room again, thanks to you!

Slosh

Those who do not know how to weep with their whole heart don't know how to laugh either. -- Golda Meir

Tonight I sit here with tears streaming down my face. It has been a rewarding day, but it didn't end well, and I'm just too raw to keep my emotions inside. A child in the WS community died this week, which always throws me off balance for an undetermined amount of time, Erik is having his awful stomach problems while I am trying to toilet train him, and I am not adjusting to the lull of summer very gracefully. I feel like I live a perfectly happy and successful life but that I am required to do it with an ruthless, ongoing intensity that places my emotions just beneath the surface. That's where the numbness I have mentioned keeps things in check. I have learned to keep this hidden and even fool myself into thinking the lake of sloppy emotion isn't threatening to spill at any time, but it sometimes sloshes and takes me by complete surprise.

Today I took Erik to pick up lunch at Subway. As we waited for his sandwich to be made, the overhead speakers began to thump with the 1986 OMD song "If You Leave." One of my favorites. I grabbed Erik's hands and danced with him in line, swaying back and forth with the music. The women preparing Erik's food were charmed by his smiling face underneath the brim of his baseball cap, and we danced our way to the front of the line, where we accepted a small plastic bag containing Erik's meal. We then made our way out into the blinding sunlight.

We arrived at our local playground just as the school district began serving free lunches to children in need. I gripped the steering wheel, squinted at the melee, and sighed. This meant the park was clogged with children. Lines of parents stretched out in front of two stainless steel refrigerators on wheels at the edge of the playground. In the past, I would have turned around, but I had previously made a promise to Erik about going to this particular park. I have nearly forgotten the days of cruising parks in town to find ones without children playing in them because of Erik's sensitive hearing. Those days are gone. Miraculously, a parking space opened up before us, and I had our things unloaded in no time.

In our community, the senior center abuts a large playground full of children. This is brilliant, if you ask me, as different generations can mingle together. Erik and I walked away from the chaos and chose a quiet, shaded picnic table toward the senior center. A gray-haired man rudely and enthusiastically revved the engine of a brand new Ford Mustang with racing stripes in the parking lot, and the people walking out of the building laughed. Erik looked up at the shelter we sat under to shade us from the sun in amazement. He said, "Oh wow. This is a nice house."

We were soon joined by another elderly couple at the next table. She opened a pack and spread out a red and white checked tablecloth. On it she placed fancy wine goblets, fat sandwiches encased in plastic wrap, and a miniature bottle of wine.

A pair of frail-looking women tottered down the sidewalk towards our area. They seemed to be holding onto each other for dear life. They chose another nearby table and opened another pack containing food, including half cans of A&W root beer and goldfish crackers. Erik grinned at them all, muttering the nonsense phrases he considers charming but that nobody else can come close to understanding. Sometimes I wonder if he slurs these made-up things just enough that people find themselves leaning closer to him. It wouldn't surprise me.

One of the women was very chatty. We consumed our meals, and I enjoyed her questions and comments, some of which made me laugh ("What's the deal with that vitamin water they are selling, anyway?"). When we were finished, I helped Erik dismount the awkward bench of the heavy picnic table, and I asked him to say goodbye to our companions, which he did. I threw our garbage in a tall, round can nearby, and Erik stood on his toes to try to spot where it all went. I had to pry him from it in order to begin our trip back up the sidewalk to where a sea of kids churned all over the play equipment.

Erik asked to try the slide for babies. The playground is divided into three areas appropriate for different age groups. We started with the area for young children and worked our way up successfully for the first time with no protests from Erik. He climbed over each structure completely independently while I sat soaking up sun through a layer of SPF 45 moisturizer nearby.

This is a major accomplishment for us both.

At the final play area featuring a maze of bridges, elevated walkways, and one steep slide, a group of seemingly gigantic, obnoxious boys camped underneath Erik's favorite rock climbing wall and screeched, playing some made-up game, hurling insults at each other, and occasionally accidentally kicking each other in the face, much to my delight. I could not even begin to accurately guess their ages. A large boy rode a skateboard down the slide, making the massive structure shake. Two small children glided by on scooters. Erik began to lurch for the wheels, and I said, "Erik! Not yours!" He looked at me with complete understanding and acceptance in his eyes and moved on to an elevated walkway over the soft playground surface. He gripped onto the railing with both hands and gingerly took step after sideways step, slowly making it all the way across the unfamiliar surface, simultaneously greeting the children who passed by. He then ascended a flight of stairs and found the top of the slide, sitting on his bottom and sliding back down to me.

My heart swelled with pride.

The boys' screeching only intensified. Erik's hands suddenly flew to his ears, and he stopped in his tracks, but he never once looked back at me. The children sprinted by him at their frenzied pace, and he simply stood still in the sunshine, looking like a frail creature from another planet observing another culture steeped in an inhospitable atmosphere. I quickly climbed up the structure and stood behind him, placing my palm over his chest to assure him I was there, although he didn't really need it. If anything, I was the one who felt like an alien. I really wanted to touch him and feel anchored to the planet again. As I felt his heart beat under my hand, I winced at the familiar, brief stings of anger and despair before they faded deep under my ribs. The sudden, stabbing pain caused my eyes to water, but any tears dried before they could spill from behind the dark lenses of my glasses. And then things were fine again.

I said, "Wow, those kids are pretty darn loud."

Erik was in full agreement.

He then came out of his frozen stance and began to move again. Children approached him and asked him questions. When he didn't respond, they looked slightly confused but in the end didn't seem to care. I bridged the gap between them and asked Erik to attempt what they were doing on the play structure, making them feel important and easing Erik's anxiety in the process.

I'm no rookie anymore.

We ended the afternoon hand in hand walking back to the car. I asked questions about what we had seen, and Erik seemed satisfied. We agreed that we both had a great time.

Tonight I asked Erik if he wanted me to turn on his CD player to listen to music. For a couple of months now, he has been telling us no. I finally concluded that something wasn't right. I suggested some songs, and he finally agreed on a CD to play. I thought that it was odd a child, especially with WS, would not want music for this many days in a row. Erik adores music. He seems to feel it physically.

Erik's CD player is tired. I purchased it before he was born to put in his perfect nursery to play perfect lullabies to a perfect baby. It has never really worked very well, which, at this point, is no freaking surprise. I have to laugh about this. These days I have to do what my best friend calls "percussive maintenance" to get it to start. With a mere few taps using the soft side of my fist on one speaker, the music usually plays. I have done this many times.

I placed the CD in the thing and snapped the lid shut. The machine very quietly clicked and whirred, desperately trying to locate a track to play.

Nothing.

I began the rapping on it, listening for the sound of success. Instead, I heard a strange, frightened wail begin behind me. When I turned to look at Erik in his bed, his face was bright red, and tears were streaming down his cheeks. Where the skin on his scarlet face was creased, it was blanching pure white.

"No music, Mommy! Turn it off! I don't want it!"

He continued to beg me to make it stop, even though the music had begun and sounded fine. I felt like the worst mother in the world for ruining this thing that he formerly enjoyed so much in the safety of his room. How a child could survive an afternoon of the world's loudest, worst-behaved children at a playground and then shrink in terror at the sound of an electronic device whirring and my hand slapping against a piece of plastic was a mystery and caught me completely off guard. I frantically stabbed at the stop button before I ran to him and held him in my arms as he continued to cry. I promised I would throw the stupid CD player away and find him a new one as soon as I could. I told him that I was so very sorry. As I hugged him tight, the tears I had fought earlier finally spilled and streamed down my face. I hid them from Erik, but I could tell there would be many more, so I kissed him on the forehead and got up, tucking Stinky-Dog in his arms, which he was too upset to acknowledge. He seemed to be in a glassed-over, anxious trance. He was red faced, sweaty, and solemn when I shut his door for the night.

Life is good, but the intensity seems to follow me everywhere. And once in a while it turns me into a blubbering heap.

Rainbows

The weather has been stormy. Each day brings thunder and lightning like I have never seen here before. Our gravel road is sinking under a large, muddy lake, and our lawn is soggy and turning a deep golf course green. Every time I step outside, small animals scurry out from underneath the boards of the porch, no matter how many times I try to tell them they are just fine where they are.

Yesterday there was a break in the clouds, and the sun emerged. Even the wind seemed to take a break. Erik and I hurried outside after lunch, shedding layers of the extra clothing I initially put us both in. He asked me to blow bubbles, which I did until I was dizzy from lack of oxygen. The bubbles floated in front of us in batches, gleaming in the sunshine, and then drifted straight up against a patch of bright blue sky. Finally, I got back up on the porch and settled into a chair. I set the bottle of bubbles down on the porch and watched Erik navigate the stairs up to get to where I was resting. Lately he has been crashing into everything, even without his leg braces on. He sometimes reminds me of a baby deer trying to stand. He is growing so quickly that he seems to be adjusting to his own frame yet again. At times, he will even topple over from a standing position.

He clomped over to my chair and kicked over the bottle of bubbles, despite the stand my father made to encase them and keep them upright. After changing dirty diapers all day because of his sensitive gut, I heard my voice take on a harsher tone. I explained to Erik that his bubbles were gone and that he needed to be more careful with his things. He quickly stooped down and tried to dip his bubble wand inside the bottle to assure me there was still some remaining, but there wasn't. I told him that when he accidentally made a mess, he should apologize and help clean up. He looked into my eyes and lifted one of his feet up into the air. He then brought the sole of his shoe down in the center of the slimy puddle, sending out a spray of greasy droplets. I shot up from where I was sitting, angrily hosed off the porch, and ushered him inside, stating that we were through. I couldn't decide which was worse -- not knowing what my child understood or witnessing the deliberate defiance I would have given my right arm for a mere three years ago. Both were beyond frustrating. There are some days when the little things make me completely exhausted.

About ten minutes passed, and Erik seemed to have entirely forgotten about the incident. He was happily sitting in front of the washing machine's plastic porthole, watching our towels tumble in the soapy water. As I made my way by him with a pile of dry laundry in the crook of my arm, I placed my free hand on top of his head and told him that I loved him. He turned his face up to me and smiled.

He said, "Mommy, I'm sorry I spilled."

I kneeled down and wrapped my arms around him, inhaling the familiar, warm scent of his hair. I thanked him and told him that it was okay. And for that moment, everything was really, truly okay.

Patience

Don't worry, Mommy. Be patient.

-- Erik Quinn (June 5, 2009)

Erik is now allowing me to lead him to the bathroom and lift him up onto the toilet after he gets up some mornings. This occasionally requires me to sing, dance, and basically perform the world's dorkiest one-woman show, but the results are more than promising. If there's one thing I have learned about WS, it's that distraction is sometimes key while performing difficult tasks like this, as it wards off cranky fits. He has resisted the whole toilet training process with gusto up to this point.

He remains relatively passive in many activities of daily living, and this is no exception. His balance is not dependable, and his motor skills are lacking, making toileting extremely difficult for him. However, he will aim to avoid making a mess, flush the toilet once I lift him off of it, and place his hands in the sink to allow me to wash them. Strangely, he doesn't seem to understand how to perform the motion of rubbing both hands together to get them clean, although he moves his fingers around in the air a bit and attempts to go through the motions he knows he is supposed to do. No amount of coaxing, teaching, or encouragement seems to bring things like this into his realm of understanding, although I go through the motions I am expected to as a parent as well, hoping it will sink in. Only time seems to bring resolution to some of his most basic challenges.

In the meantime, I watch other children his age or younger use the bathroom completely independently, including easily manipulating their clothing. As the children around us grow, I realize how far we have yet to go.

I try not to let it get to me. I really do.

I am an expert at changing diapers now, as I have been doing this for almost five years. I would be lying, though, if I said that doing this isn't horribly depressing. It is for this reason that the little steps we take forward are very rewarding indeed. We will get there with time.

It all comes down to being patient.

Life As We Know It

Today Erik accompanied me to the store. I shop without him during the school year, but now that preschool has concluded, he rode with me today. I forgot how much more interesting a public outing can be with one Mr. Erik Quinn.

When we arrived at the store's parking lot during lunch hour (I was already kicking myself), it was packed with impatient people trying to accomplish their errands in an hour or less. I took a deep breath and muttered to myself as I crammed Erik into the shopping cart. I threaded his rapidly expanding feet (now a size 10) through the holes designed for chubby baby appendages, and, miraculously, he settled down in the seat without upending the thing like a monster truck attacking a row of sedans. I exhaled a sigh of relief. Usually, if I run into anybody I know, Erik gets wide, scrutinous stares, as people perceive him as gigantic now, huge for his age. I suspect that at least half of this stems from the fact that he is crammed in shopping carts such as this and appears freakishly large, like an grotesquely swollen, middle-aged man dressed in an adult-sized diaper and sitting in a crib the size of a Buick at a carnival side show. The truth is, he is of average height on the typical growth chart. Also contributing to the effect is the fact he has inherited my long, clumsy legs, making him appear even taller. There is also not a lot of extra fat on my kid, despite the fact it seems he consumes his weight in peanut butter each and every day.

Erik is a big fan of the Sesame Street DVDs I purchased to keep him entertained while I work. He adores the characters I grew up knowing as a kid. His Mr. Hooper impression is dead on. As we rolled into the store today, he was channeling the deceased storekeeper, yelling, "David! David! I can't find my glasses! David! I can't see a thing without my glasses!" For a moment it seemed there was an irritated, elderly gentleman in my cart threatening to spurt phrases in Yiddish.

Like many children, Erik has yet to hone his skills of appropriately engaging strangers socially. However, his attempts seem different than those of most kids his age. While many children are shy, Erik shakes hands like a politician. He greets even the infantile ("Hello there, baby!") He smiles widely. And he sometimes shouts to get a passerby's attention. He has learned that his window of opportunity sometimes closes quickly as his shopping cart rolls by, so he shouts whatever comes to mind at that very moment to attract attention. This usually emerges in the form of engine sounds, "Yee haw!" or animal noises, especially the ones cats and dogs make. It makes for awkward moments sometimes, but I mostly flash a smile and move on, as I am used to this phenonmenon now. Four years ago, my formerly shy self would have been horrified.

Today was slightly different. He craned his neck to glimpse a couple of boys his age walking quietly beside their mother and yelled, "Hello girls!" The mother looked more than annoyed, and I kept rolling along, wincing slightly as we passed out of sight. From there, he transformed into a hot dog vendor, something he also likely picked up from Sesame Street, screaming, "Hot dogs! Get your hot dogs herrrrre! How 'bout a little saurkraut? Catsup?" The New York accent was perfect. It was as if I were listening to a recording of someone entirely different. He sounded like a 35-year-old man working a job in Yankee Stadium.

We spent an hour in the store filling our cart to the brim with groceries. Erik spotted things on the shelves of interest, like chocolate ("Oh, I looooooove chocolate!"), and giggling with delight at the photos of fluffy kittens on cans of cat food ("They're looking at me! I loooooooove little kittens!").

It was a real adventure, just as I had promised him.

After we had annoyed everyone behind us in the checkout line, as the man checking made a big, slow show of things especially for Erik's benefit, we headed home. To the west, the clouds formed gnarled, pearlescent columns lit by the sun that were so incredibly massive and bright you could hardly look at them. I asked Erik if he thought they were as beautiful as I did, and he said yes. To the east, the sky was as black as night. The clouds seemed to churn slowly, as if something was working behind them, and I told Erik the thunder would begin soon.

When we got home, I unpacked our things and made myself comfortable in the kitchen, my favorite place to be in the middle of the day. Erik devoured two waffles with strawberries and half of a peanut butter sandwich. The sky above our house began to emit deep rumbles, and I took a glass of wine, a candle, and Erik's toy semi truck out to the front porch. I stretched out on the chaise lounge while Erik rode his truck back and forth, laughing out loud he was so happy. A bolt of lightning snaked down from the sky over the desert, and Erik stopped in his tracks as the sound of thunder that followed seemed to spread behind the clouds above us. Slightly alarmed, he came to me quickly and put his hand on my knee. I put my palm over it and assured him that we were perfectly safe. I asked him if he thought the lightning was beautiful, and he said that it was. I heard the sound of hail pellets beginning to slam into the ground, and soon the yard was being peppered by dense balls of ice. I looked back at the open kitchen window and saw Gracie-Cat's round, furry face materialize, seeming to float behind the screen in the darkness. Her eyes were dilated to maximum diameter, infused with primitive fright. A thunder clap sounded, and she disappeared.

When the cold wind picked up and chilled the air, I collected our things and took Erik's hand to lead him back inside. He cried in protest, but I assured him we would do it all over again tomorrow.

Down

I'm feeling discouraged today. Parks and rec called today and informed me that the art class I wanted was full but that there was one available at the same time as Erik's vacation Bible school. I am on a waiting list for another class but do not expect to get in. If I do, I won't have the support of my fellow special needs mother, which scares me more than a little bit. I don't think I'm ready for braving our first tiny attempt at mainstreaming on my own. Yeah, it's just a stupid art class. But it's our first stupid art class with typical children outside the comfort of our special education bubble, and I know myself well enough to know how I will feel afterwards. It's a really big deal.

I should be thankful I had the guts to do something new and leave it at that. Tomorrow I plan on being thankful. Today I just feel discouraged.