Tuesday, April 29, 2014

Eye of the Tiger

We made headlines again tonight.

At Lane's t-ball practice, no less.

It always picks the perfect time to descend upon me. It's laughable when I look back, really. I can't make this stuff up.

Brenner was playing dutiful t-ball dad while I followed Rowen around, and around, and around. He hit the playground for awhile before getting his balloon from the car to kick around. I was talking to our very kind connections leader at our church on the sidelines while keeping a watchful eye on Rowen. It went something like this:

Connections Leader: "So why aren't you guys connected to a small group?"

Me: "Umm, we would love to but we really can't with Rowen."

Connections Leader: "We need to get you guys connected."

Me: "Um that would be nice, but..."

As if on cue, I see Rowen out of the corner of my eye batting at the balloon over a giant puddle.

Boy with autism who hates a drop of water on any part of his body + a massive puddle = a good reason we are not connected. To anything. Ever.

 It was like the world went in slow motion for a moment, and all voices reverted to that slowed down, deep throaty version of themselves when I saw Rowen take one last shot at grabbing the balloon- holding my breath and hoping for a miracle- then slamming down into the puddle.

NOOOOOOOOOOOOO (Slow-mo as I jog Rocky style across the field with Eye of the Tiger pushing me on)

I braced the connections leader with "This is going to be bad" just before Rowen screamed "SHIIIIIIT!!" at the top of his lungs. I excused myself, noticing the giant crowd that had just turned to see who would allow their child to scream obscenities in the church parking lot. I swooped him up toward the car and tried to contain the massive meltdown he had. Poor kid. Poor me.

Just how I pictured t-ball going. The red-faced, obscenity-screaming, self-loathing autism monster was alive and well in my boy.

Tonight as I sang what Lane calls "The Baby Song" at bedtime, I was reminded of singing it to Rowen for so long when he was little. When he was a baby I could have never known how true those lyrics would ring as I help Rowen along his path. So you guessed it, I am going to put the lyrics here. If I had only known that "The Baby Song" would have doubled fittingly for a boy with autism...

Baby mine, don't you cry.
Baby mine, dry your eyes.
Rest your head close to my heart
Never to part
Baby of mine.

Little one when you play
Pay no heed what they say
Let your eyes sparkle and shine
Never a tear
Baby of mine

If they knew all about you
They'd end up loving you too
All those same people who scold you
What they'd give just for the right to hold you

From your head down to your toes
You're not much, goodness knows
But you're so precious to me
Sweet as can be
Baby of mine

Wednesday, April 16, 2014

Somewhere in the Middle

I guess you could say I have become a bit of a loner. It comes in stark contrast to my high school days where I erred on the side of obnoxious class clown. Ok, maybe even after a little after high school.

When I go to pick up Rowen after school, I mostly keep to myself. There are some other sweet moms that I could easily strike up more conversations with, but my constant need to oversee my rambunctious boys shuts that down pretty quick. The other day I caught Lane with his arms around some kid's neck, and as I darted toward him in a panic he said, "Wook, mom! Headwock!" Classic daddy wrestling move, but it managed to jump start my heart pretty fast. Ok son, how about we find that swing set waaay over there?

From years of watching out for Rowen and his sudden outbursts and inability to control himself, I have worked my way into a high alert status that leaves little room for anything other than on-duty-mom. I am sure most of this is in my head since we can look pretty normal most of the time. I am just always ready for the next move. High alert. I think this leaves us somewhere in the middle.

Rowen has always been high-functioning enough that he is verbal, social, and can play kind of like the rest of them. But watch us for more than 10 minutes or so and you will see the cracks in our foundation. Big, giant, cracks that often threaten to pull me under.

Rowen had a serious meltdown last week because I broke the yolk in his egg as I was making it. He never recovered. In fact, I got a lovely call from the principal that day to emphasize how he hadn't recovered. This morning we managed to dodge a bullet because I was able to find the socks he was looking for before the storm broke. Oh, it rained for sure, but at least we managed to seek shelter before the tornado ripped right through us. We also recovered last night from a major meltdown over some homework. At Lane's T-ball practice, I managed to eke out a quiet spot to help Rowen finish his homework. Home run.

As I was dropping Rowen off at school this morning he asked, "Mom, is there something wrong with my brain?" Sound of mom's heart breaking. After my reassurances, I couldn't help but think about that giant foundational crack we have in our seemingly normal system.

I was listening to an interview of a woman I have been following for years who started the TLC Foundation for pediatric cancer. At the end, there was talk of finding the right platform to raise awareness for something you see as a good cause. Somewhere in the Middle comes to mind, because that's exactly where we are. Don't get me wrong, I don't feel like we are in the middle. I feel like we are in the trenches with bullets flying overhead every second of every day. But we look as though we are on the normal side. "Oh he seems fine," should be tattooed across my forehead.

I often wonder if this lonely place is where so many autism moms find themselves. We become isolated because we look like we can fit in but we just don't. So thank you for reading about our daily lives. And if you would like to share this so others who are in the middle can relate, feel free. Sometimes the middle can be the loneliest place of all.

Then again, it might not always be...
 
 

 

Wednesday, March 26, 2014

I Am The Charlie-Browniest

I think I have finally figured it out. Just like Charlie Brown when he dropped that clinking nickel in Lucy's jar and had her psychoanalyze him. He had his "THAT'S IT!" moment, and I think I've had mine. I know what is wrong with me.

It's Rowen.

I have been having panic symptoms on my way into the office Wednesday evenings. One full-out panic attack where I thought I might hyperventilate from my heart pounding out of my chest. This doesn't bode well for a psychotherapist. I had a sneaking suspicion that it had something to do with the near-accident I'd caused months before that snowballed into panic. I had myself convinced that was it until today. Now I am thinking it's something else.

It's Rowen.

On my way out of Fitclub at church this morning (kids in tow-yes they danced around me while I gave a go at Insanity-mostly heaving on the floor), a dear friend caught me and told me I should bring the boys back in a few hours for the kid-fest they were going to have.

Thump, thump, thump.

She told me last time there were about 80 families that came.

Gasp and thump, thump, thump.

I looked at Rowen and thought absolutely not. No way.

But just as I laughed away her suggestion, little Ms. Optimism crept into my psyche and hinted that he did do well while we were at Fitclub. Before I took my little spring-breakers to the class, I had pictured them doing nothing but fighting and me dragging them out kicking and screaming. I was wrong. They actually did well. Rowen was fine. Sigh. Maybe I will give it a shot.

So I brought them back a few hours later to a crowd of over 125.

Thump, thump, thump. What was I thinking? I kept telling Rowen we could leave if it got too crazy, but I think I was saying that more for me than him. How would he react to the crowds? Would he have a meltdown or would he be ok again? Was little Ms. Optimism ruining my otherwise smooth day?

Rowen usually has an uber-focus on something and this time it was the promise of pizza that would come at the end. He did ok until the wait for the pizza was longer than expected. Thump, thump, thump. And then the pizza was too hot to eat. Thump, thump, thump. And then he exploded, muttering some non-church-like obscenities under his breath within ear shot of our sports pastor. Then it happened. It happened. He dropped pizza sauce on his shirt. That was my cue. I gathered up a red faced boy and stacked pizza plates and ran after announcing that the autism monster had gotten a hold of my boy again. I guess it's my only semblance of an explanation. I swear I don't suck as a mother. I swear I don't put "Son of a b----" on his spelling words at home.

Oh well. Thump, thump, thump.

So the last thing I heard from Rowen before leaving for work was a timid little, "Mom, do you love me?"

"Yes, of course, why?"

"Because I am thinking you don't love me."

A battle I fight every day. He's like the Drew Barrymore on 50 First Dates. You have to fight the same things every day. And it truly is a battle. Battles don't come easy. Battles are hard and come with a thump, thump, thump in the chest. And it's never easy to leave him after I've been with him all day. I worry about him. I know God doesn't fancy that so I need to work on it. And I will. I just need a breather. Not from Rowen, but from the thump, thump, thump. At least today was another not-so-subtle hint that homeschooling is our best option for next year. He needs to learn in an atmosphere that doesn't create the thump, thump, thump for him too. He will get us there. He always does.

Maybe Charlie Brown too: http://www.youtube.com/watch?v=b8SDztycKwY

Thursday, February 27, 2014

My Banana Boy

Dear (sweet) Lane,

You will be four next month. You are my cuddler, my monkey, and my banana boy. I made a quick trip to the grocery store today to stock up on your favorite food so you wouldn't miss out.  I can't count the number of times I have been awakened in the wee hours of morning with you holding a banana up in the dark asking if I could peel it open for you. When you are done, you get another one and we start again.
 
Lane, you are sweet, wild, and kind. You are the little brother of a boy with autism. The latter means more than you know right now, but it will come with time. For now, I hope you will stay my little boy. I can't fight your birthday that is fast approaching and the inevitable understanding that you will come to have of autism. You already know too much.

I see how you take favor on your brother and mimic everything he does. After all, he is your big brother. You look up to him as if he wore the crown of England atop his bright blond hair.

When you get mad now, I hear you yell, "I DON'T WUV YOU!" How do I explain that this is not how I pictured you learning from your big brother? It doesn't seem fair to you. I know it makes you sad when he says he doesn't love you when he is angry. When I tell you not to react the same, your eyes open wide with confusion and you ask, "Why Rowen say he not wuv me?" 

Well, my sweet boy, you probably didn't notice how your big brother got a small drop of water on his favorite shorts yesterday and went into a tantrum, complete with crying and rolling on the floor and screaming how it was his worst day ever. You probably were playing with your planes when he yelled that he hated himself and wanted to die. You may have been digging into your Lego drawer when he screamed about how he was stupid because he messed up the letter "R" on his homework paper. You may have been squaring off with Darth Vader using your light sabre when your big brother said he stopped eating his lunch at school because he was afraid he would choke in front of people.

Or you may have been listening.

I don't know how this will affect you five, ten, or even fifty years from now. I know how frustrated you get now trying to make sense of it all. It breaks my heart to know you have to watch such things on the sideline, and what's worse, learn how you will act because of it. It is heartbreaking that we are here at all.

I love to see when you shine, like at preschool today when I got to read to your class and watch you go on a bear hunt with your friends. I loved watching you hold the hand of a sweet boy with Down Syndrome and help him into the classroom because you just might know somewhere deep inside that some days he might need a little "extra." Kind of like your big brother.

Maybe it's ok to be listening.

So if you have ever felt like a boy on the sidelines, I am sorry. You are never on the sidelines. You are my sweet Lane and I love you to pieces. I will always peel your bananas for you at six in the morning.

Love,

Mom

Wednesday, January 29, 2014

I Wanna See You Be Brave

Today was a day of firsts. Maybe 5 or 6 years overdue, but nonetheless.

Rowen got his hair cut today at a hair salon.

Before you yawn at the seemingly mundane details of this, consider the long and bumpy road it took us to get there. So much so that I admit to crying on the way to the salon. Happy tears. I surprised even myself. I didn't know it was coming, but it was there. Thank God for waterproof mascara.

Listening to Sara Bareilles' song "Brave" on repeat didn't help stop the flow. Rowen was brave after 7 years of haircutting torment and tears and screams (many from me) from trying to cut his hair in our kitchen. Think sensory issues, being out-of-his controlled-element, and shiny scissors near his ears. I had finally talked him into going to a salon to get his hair cut. Phew It helped that my incredible friend, Carly, was his stylist and had graciously come to our house before to cut his hair a couple times. He knew her and felt safe letting her go at it.

I figured it would be a one-time thing so I could get some pointers on how to better style his wild hair. He is very particular about it, and I definitely think he likes it long in the front to help him "hide" a little. So no faux-mohawks or spikey do's for this guy.



To my surprise though, he loved it! Another Phew! He said he would come back again! Whoa! It didn't hurt that Carly got him a free pop at the end. It was like a trip to the circus! Well, kind of. Ok, so not really, but it might as well have been the way he reacted.

No it wasn't perfect, but it went better than I could have asked for. Yes, in the mere 10 minutes we sat in the waiting room I had to ask Rowen to calm down, get off the floor, and-my personal favorite- stop grabbing your crotch (I mean, really grabbing it. Although in his defense he simply thought it was super cool how the fabric felt when it was stretched out- and yes he was doing the splits on the couch. I actually had to say "No Rowen, I will not grab your crotch and feel it too." Jeez, does that ever sound bad. The things that I actually hear myself saying sometimes...).

So here we are, one lovely haircut later and he is happy. I am happy. Yay for us. And these lyrics show how big Rowen's brave is. He did it.

Take that autism.



Everybody’s been there, everybody’s been stared down
By the enemy
Fallen for the fear and done some disappearing
Bow down to the mighty
Don’t run, stop holding your tongue
Maybe there’s a way out of the cage where you live
Maybe one of these days you can let the light in
Show me how big your brave is

Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave


And if you have a moment, take a look at the video. It will inspire. Maybe Rowen will too if you think of him.

http://www.youtube.com/watch?feature=player_detailpage&v=QUQsqBqxoR4

Sunday, January 12, 2014

Did You Know Batman's Cape Is All Wrong?

Rowen has never been a "toy" kid. Birthdays and Christmases have always been pretty easy, though I tend to make them more complicated than they should be. The big hit for his birthday was a heated blanket (that he cranks up to high every night and then begs and pleads to wear shorts during a Polar Vortex) and among the many wonderful Christmas gifts he received he seems to be enjoying his mattress topper. Yes, he is not a "toy" kid.

So imagine my surprise when today at the grocery store, Rowen ventured down the torture- er, I mean, toy aisle and desperately wanted a batman figurine. The last figurine I remember him getting was around age 3 when a friend of his was into Power Rangers. He HAD to have one so off we went on a Power Ranger hunt. I will never forget when I looked in the backseat to see Rowen in his little car seat holding the little figurine in front of him with absolutely no clue what to do with it. I never saw that Power Ranger in his hands again.

So today when Rowen was so stoked about a Batman figurine, I admit to being a little curious. After negotiating a deal that I would pay half if he could figure out what "half" was (which he did- smart kid!), he went home happily with the Dark Knight.

He would set him up somewhere, and just get excited to have him. No flying. No saving the world. No Batman talk. Just propped up somewhere with a smiling Rowen looking on. Good enough for me.

Not long after though, I heard Rowen upset in his room. I went up to see what was wrong and he was getting angry with his Batman figurine for not standing up by itself and for the cape being all wrong.

"You see his cape?" Rowen screamed through tears, slamming Batman up and down in an ill-fated effort to get him to stand up on his own. "This one side touches the bottom and the other side is up a little. And he WON'T STAND UP!"

Face red and crying, I tried calming him by fashioning a custom Batman stand out of play dough, but it just wasn't good enough.

"My brain is so stupid!" he cried. "My brain always thinks things this way and it won't stop! I guess I just like people more than toys."

"Well, that's what's special about you. You see things other people don't," I said.

Nice thought, though I could tell he wasn't fully buying. I would take what I could get though to get him back on track and calmed down. I added a hair rub into the mix to seal the deal.

Batman needed to vacate the premises. His cape is all wrong.

I do love that Rowen has a special way of thinking, but I also know it can be stressful for him. It's always hard to hear how he feels like something is wrong with him or his favorite, "my brain is stupid."

It's a stressful thing for us too, dealing with the high negative energy and hoping he doesn't really grow up thinking he's stupid. I hope instead he embraces his differences and figures out how to deal with them, and also how to love them. If only we had a little help from the Dark Knight himself. If only they would make an OCD-version of Batman...