Once Upon a Time

I always enjoy getting a little one-on-one time with Lane. With all the emphasis on Rowen, I often worry about how Lane might feel. I am always having to pull him away crying from all the seemingly fun things we end up doing for Rowen. Bowling, horses, and his beloved OT, Ms. Cindy's, "house" where any kid might feel they are at Disney World. Lane loves all that stuff too. We've tried hard to let him in on the fun as much as we can. He became the toddler bowling champ at Rowen's special needs league recently and he always gets a few strikes in at Ms. Cindy's veritable playground. I also signed him up for pee wee soccer and T-ball starting in May.

Today I took Lane to OSU to take part in a study on children's development. I've done them for years, even when Rowen was a lap baby, staring at the goofy on-screen computer cues that researchers eat up for a living. Lane's gotten a few certificates himself, dubbing him a "master" of infant development. We do it for fun and to spend a little time together.

We pulled onto campus today and I stepped foot in the new psychology building on campus. Once upon a time, the old psych building that stood in it's place was my stomping ground. I walked past the many students lining the hallways with books and study notes in hand and thought about once upon a time. Instead of a bookbag, I donned a precocious 3-year-old who didn't know they meaning of quiet. I had to laugh at how many heads turned at my quizzical little Lane while I was taking in the feeling that once was.

I have to admit, as a school nerd, I felt a twinge of sadness at being absent from any and all classrooms for years now. It also stirred up feelings of what life was like before autism. My heart pounded at the thought of freedom I had long ago, and then dropped at the idea of autism having taken some of that away. I missed it. For a moment I missed my once upon a time life devoid of therapists, doctors, and endless research on a disorder we practically know nothing about. For a moment I was back in time, having erased all the hardship that comes with autism.

Lane brought me back to reality with his excessive chatter with the research assistant and as we approached the door, I realized my reminiscing not only erased autism but it erased everything I've come to love in this world. It erased first birthdays, little boy hugs, fingerpaintings on my fridge. It erased goodnight kisses, chatterboxes, and reading Thomas the Tank Engine books. It erased notes telling me I'm the best mom in 6-year-old handwriting and mischievous smiles from a toddler who wants me to sing "Glory of Love" at bedtime- again. It erased two little boys that bring the most joy I've ever experienced. And though that joy came with the devastating lows that autism creates, I realize that my former life didn't hold a candle to what I have now.

Lane finished his research trial (now I know he prefers to play with bars of soap rather than actual toys- at least Christmas will be cheap this year), and we walked back through the halls where students still crammed for tests and scribbled on their papers. I grabbed Lane's little hand and packed him in his carseat, chattering away about the banana he was eating and the new "E-I-E-I-O" book he got as payment. I took my little chatterbox (I really think he has a word quota he has to meet each day) and drove off campus, saying a goodbye under my breath to a life that once was. I turned my blinker on toward home, but made a stop at the candy store. I guess the candy store is also akin to Disney World, because Lane lit up like Christmas at the chance to pick out anything he wanted. He picked out a 50-cent succer, one for him and one to give his big brother when he got home from school. What a sweet smile my little scholar has. Now that's something I'd never want to see erased.

A Day in the Life

So it wasn't by the 11 o'clock news that things changed for the worse as I forecasted in my last post, but soon enough the storm hit. We had a few bad days but at least it now seems to be steadily improving. And by 'a few bad days' I mean scary, sad, maddening, heartbreaking, and just about everything else under that umbrella you can throw in there.

The heavy hitter lately has been Rowen saying he wants to kill himself. That's the heartbreaking and scary part. If we have to discipline him, he says things like, "I wish I had never been in your tummy," and "I'm just so bad you should kill me." I can tell his spirit has been very heavy lately. In so many ways, he is a perfectionistic kid. I think his rough exterior simply covers up his fears and inadequacies. I'll be honest though, that rough exterior is hard to contend with. I can't count the number of times he says he hates us or wants to kill us. He got so mad at Brenner the other day over a pillow (yes, a pillow) that he threw a fit of rage directed right at him. That's the maddening part. We just want to scream back (and some days I admit that we do) but I know that's not going to help. We need to keep learning the language.

A friend posted a video of a non-verbal teenage girl with autism, Carly Fleischmann, to my facebook page (http://www.youtube.com/watch?v=a1uPf5O-on0) who found her voice through typing her words on a computer screen. Though Rowen is verbal (very, very verbal!) it was eye-opening to hear how she describes some of her struggles. She said "We create output to block out input." Amazing. I admit I've never thought of Rowen's tantrums in this way. I think about when we took him to the Easter egg hunt at church where bad weather forced us indoors. Translation: the enormous crowd was just crammed into a smaller space. God bless him, Rowen tried to go into the egg hunt room but quickly turned around to meet my gaze with a look of sheer terror on his face. It built and built until he threw an enormously fabulous fit in the hallway, complete with wanting to kill me. It took a quiet room and some special people to help him calm down. Output versus input.

Carly also said it's hard to look at someone's face because she takes a thousand pictures of it the minute she looks at it. I can't tell you how many times I've uttered the phrase "look at my face" to Rowen. I actually know better on this one already, but sometimes it's just a failure to launch.

A few days ago after a long day of arguing, Rowen- at bedtime- said he knew I didn't love him because I'd gotten mad at him that day. I explained that sometimes we get mad but it doesn't mean we don't love each other. My words didn't really mean much to him though until I wrote them down. We exchanged letters about how we will always love each other even if we have hard days. Shortly after that he fell into a peaceful sleep with my letter by his side.

So score one for me I guess, because I'm learning to speak the language every day. And though I write a lot about my failures, I jump for joy at the progress we make little by little. While some days Brenner and I feel like we are more behind the starting gate than beyond it, I have to remind myself that that's not true.

And speaking of starting gate, check out Rowen at equine therapy. He loves it! He caught on so fast, which is huge in our book. Maybe the horse just speaks Rowen. It's a beautiful, frustrating, and completely rewarding language we could all use a little schooling in.

Rowen at equine therapy hamming it up!

I had to add this photo from the zoo yesterday. Rowen saw this goat at the petting zoo sitting all by himself and Rowen was drawn to him. I think Rowen thought this little goat was lonely sitting outside the crowd and he wanted to make him feel better. I guess being part of the crowd isn't always what we need.

And one more of the dudes on the train ride at the zoo. Just because. 

Some Good News- Finally!

So I have a super big disclaimer for this post. It can all change tomorrow, because it usually does. I may eat my words with all the good things I am about to say by the 11 o'clock news, but what the heck.

So Adderall. I like you. You may in fact be one of my best friends. At first I was really scared of you and thought we would never get along, and now I would score you on the streets if I had to.

Needless to say, the Adderall is working for Rowen. We are all a little more sane in our house lately. And thank goodness Rowen seems to feel so much better. He still struggles with anxiety and anger/frustration control, but I am no longer amassing some serious bank in an off-shore account for when I finally lose it and need to vacate the country.

Not one week ago, a little self-medication may not have been so far off the beaten path for my downtrodden self. Now hold the phone a minute. I am super Christian nice girl and would never really do that (except for the occasional overdose on anything that starts with the word "Hershey's"), but Christian or not I don't think anyone can escape these thoughts when listening to Tom Petty and his Heartbreakers.

So let's get/To the point/Let's smoke/Another joint
Let's head on down the road/There's somewhere/I gotta go
You don't know how it feels/No you don't know how it feels/
You don't know how it feels/To be meeeeeeeeeeee

Is that all that guy sings about? Geez. A digression...

But seriously, the worst thing I think I've ever done is go out with my fellow uber-Christians (love you guys!) in my old Bible study group (yes, I know) and toilet paper our pastor's house (again, I know-and by the way, he knew). Another digression-this time in the form of confession I guess. At any rate, I'm just saying it's been tough around here.

But say no more, I think we've finally found our help. The weather changing has also been a game changer, which I'm sure most of you can attest to as well. Now that we are past the impulsiveness that gives Rowen such a hard time, I will say the anxiety has become the focus recently. Most nights I have a 6-year-old in a sleeping bag next to our bed. A lot of dramatic 6-year-old friendship issues have arisen. It does break my heart. I've seen too many tears from this boy.

So despite a better atmosphere in this house, he could still use some prayers. We all can. Especially for direction. I am still thinking about homeschooling (I know I just got a bunch of cross-eyed looks) but it may be our best option. I just wish God held up a sign for me that gave me complete and very specific instructions on how to spend every second of every day of every week of every year. I don't think that's too much to ask, right?

And don't worry, I am not listening to Tom Petty that much. I only pull out the album to hear Mary Jane once in awhile.