Bowling with Biners

A few weeks ago, we went to our first-ever NOAH Bowl-A-Thon with the boys. This is NOAH's big fundraiser held across the country every year, so we were excited to finally connect with other NOAH families in Michigan. We were a little apprehensive about the idea of trying to entertain (read: maintain control over) the boys in a crowded bowling alley for that long, and we had no illusions that they would be the least bit interested in the actual game.

But we were pleasantly surprised.





Emerson actually took to the concept enthusiastically and willingly - marching out to the lane during his turn and allowing us to help him throw the ball. Fionn watched this all with great interest, playing the dual role of cheerleader and troublemaker. He was up and down stairs, grabbing at the balls as they shot out of the machine, trying to pull balls down from the shelves, attempting to run out in the middle of the lanes - anything he could think of that seemed remotely dangerous.



He did, however, take the game very seriously. Every once in a while he would find an empty lane, pause at the line, narrow his eyes in concentration, and then suddenly - and with much gusto - swing his right arm around like a limp, useless weight. Try to imagine what zombies would look like if they took up bowling and you'll get the picture.



Of course my three-year-old out bowled me during the game, but my goal was to meet other NOAH families and ensure the boys left with all 10 fingers still attached. I'm happy to report both goals were met.

We expected to meet maybe two other families with NOAH kids and maybe a couple NOAH adults, but instead they were several families. There was even one other family with two children with albinism, which I really wasn't expecting. For a couple of hours, having kids with albinism didn't seem unusual or remarkable in any way. We did still get a few "Are they twins?" comments from other families, but at least no "Where did their hair come from?" or "What color eyes do they have?" No stares or whispers or stupid comments. It was bliss.


All the kids from NOAH families.


All the OCA kids.


Fionn with Uncle Frankie, a friend who generously supported NOAH by bowling on our team.

We were already planning on attending our first big NOAH conference in D.C. this summer, but our bowl-a-thon experience made us even more excited about how much we would get out of the trip. Not to mention we now have NOAH people right in our own backyard that we can connect with on a regular basis.

I'm sure there's some profound bowling metaphor to be made here, but I'll spare us all. (Dammit, I still managed to pun.) Instead, I'm off to honor my sons' new-found passion for bowling by making them matching purple jumpsuits and hairnets. The Biners abide.

A Snowy Day

First, I have to say that I am so grateful for all the name suggestions everyone offered this past month. I proved my theory that while I may not be exceptionally witty, I surrounded myself with people who are.

I haven't been able to bring myself to pick just one yet, but I promise I will be cleaning someone's house soon enough.

In the meantime, I wanted to share some pictures from our winter adventure. We spent 30 minutes getting the boys bundled up in winter gear, 5 minutes trying to convince Emerson to get on the sled (without success), and 10 minutes pulling Fionn around on the sled before we collectively realized we were freezing our butts off.











We were making Valentine's earlier that morning and Emerson decided he wanted to carry around one of the paper hearts all day. It's a miracle it survived our sledding adventure.

copyright Mattson Photography

Our Month in Pictures

For those of you who don't wish to torture yourselves by going through the hundreds of new pictures we just posted on Flikr, here is a slightly abridged (albeit long enough to still be embarrassing) photo post/catch up post:

The best time of year in Michigan is Fall. And the best activity in Fall is the Cider Mill. You basically gorge yourself on homemade cider and doughnuts, pick a few apples or pumpkins yourself to feel more wholesome, and try not to spend all your money on the myriad of activities meant to lure in families with young children. This year, we took along our friend's baby girl, Jane, so they could catch up on housework. I have to admit, it was fun pretending we had twins plus a toddler - although I was disappointed at the lack of reaction among the general public. Apparently, having two kids with white hair garners a lot more attention than having twins and a toddler two years apart. Hmm.


I have to say, seeing Robbie with Jane made my ovaries ache. Sigh.


Emerson quickly took to the idea of thumping pumpkins to test how good they are. So we had to pat ALL of them.


The strangest sight was seeing them "stock" the pumpkin patch. Yes - we drove on a wagon out to this field that used to be a pumpkin patch, but had long ago been picked over. As we are staring at the "planted" pumpkins, a truck pulls up and workers start unloading more pumpkins. So people crowd around to get one, seemingly unconcerned with the absurdity of this ruse. Technically our pumpkin was no different, but just on principle I refused to get one directly off the truck.


Next stop was the farm petting zoo, full of animals that had overdosed on prozac and looked long gone to the world. The woman at the front refused to charge us for the two babies since she assumed only the toddler would enjoy it.


She had it backwards.


Emerson fails to grasp the concept of sticking your head through the wooden display for a picture.


He also fails to understand why we are making him stand on a large haystack.



A few weeks ago, Emerson was in a family wedding in his first-ever ring bearer gig. I was the officiant, but let me tell you - being the mom of the ring bearer was much more stressful. The first step was getting fitted for his tux - and discovering the magic of mirrors.



Incidentally, they took every single measurement possible, then turned and asked me, "What size does he wear?" When I answered 3T, they turned and pulled out a 3T tux, saying, "Here you go. We don't rent this one, so you need to buy it for $70." My initial reaction was, "Why the hell did you make him sit through all the measurements if it's based on standard sizing?" My second thought was, "Screw you Men's Wearhouse, I'm buying this tux second hand." The next day I found the exact same one at a resell shop complete with vest and tie for $20. SO there.

My handsome men before the wedding rehearsal. These rare moments when I can force them into complementary sweater vests almost make it ok that I don't have a daughter. Almost.



Emerson did...poorly...at the wedding rehearsal the night before, so we came prepared with gummy bears to bribe him down the aisle. He ate all 75+ of them in the hour before the wedding started. Then we had to hide the empty bucket that he refused to relinquish under the ring pillow.


The plan was for Emerson to hold the flower girl's hand and be dragged down the aisle. Unfortunately, we forgot to take into account her need to use both hands to throw flower petals as she walked. So Robbie sent him down on his own. He walked a few steps, looked around in confusion at everyone staring at him, Robbie gently pushed him down the aisle a few more feet, and the cycle repeated. Needless to say, it took a while to get him all the way down. Ah, memories.



Next to his dapper brother, Fionn looks a little like the crazy, drunk uncle who is always embarrassing himself at family parties.


During dinner, cousin Ricky leans over to taunt Emerson, "Hey, can you make this face?"

I nearly reply, "Don't challenge Emerson to a crazy eye contest because you will go DOWN" But then I think better of it.

(Yes, I'm aware that I'm a horrible person.)



Fionn literally danced his socks off.


Watching the mother-son dance, I had one of those stereotypical moments of tearing up with the realization that someday I'll be taking the dance floor with my own sons. Sigh.


The ever-cool man, Emerson starts scouting for the best after-parties.


At the end of the month, we had to make a mini trip to Chicago so I could complete my interview with the Regional Subcommittee on Candidacy. This is a major hurdle where they decide if you have enough of what it takes to be a minister and recommend that you either continue on or give up now. But they state it a lot better than that. I did ok and passed the interview, but a combination of having a sick stomach (no I'm not pregnant, so don't email me all in a tizzy) and having some recent doubts about my ministry path made this a challenging trip. With all this weighing heavy on my mind (and stomach) the morning of the interview, we decide the best medicine would be to eat greasy diner food in Hyde Park.


Hyde Park from a 3-year-old's perspective.


After lunch, we spent the afternoon exploring the Museum of Science and Industry. I prayed that my sour stomach would clear up before my 5pm interview. It did not.




Emerson, being Emerson, loved the endless ramps and the water ball pit.


Fionn, being Fionn, enjoyed just about anything that involved getting out of the sling.



And I finally got to live out my dreams of going to space.


Emerson's first trick-or-treating experience was the downtown Halloween parade the day before. By the time we walked down there, he was passed out - but I was determined to get some trick-or-treating in before the parade ended in an hour. So I shook my kid awake, bribed him with the promise of candy and dragged all three of us through the rain to get it done. My violent illness and squirming kids be damned - we were going to have FUN! And despite my insane drive to force my children into enjoying themselves, they actually did have fun. The moment people started putting candy into his bucket, Emerson was wide awake and babbling an excited stream of chatter that included the word "wow" and "candy" several times. It was priceless.


Fionn's First Birthday/Halloween Party. The number of babies in attendance and resulting chaos was a sight to be seen.


The moment he saw the cupcake, he burst into tears because we weren't giving it to him fast enough. Needless to say, he did not share his brother's aversion to digging in and getting messy.



Notice the single tear for dramatic effect.


Six teeth and a tiny stomach notwithstanding, Fionn devours every last crumb.


Despite an entire day of partying, we still have a night of trick-or-treating ahead of us. Emerson is thrilled that the generosity continues, although I will spend the next few days trying to convince him that we can't go outside every night and collect candy from our neighbors.


After nearly two hours of trick-or-treating, Emerson falls into a deep coma.

Answer Me!

I know I've been MIA, but there has been some good news among the frantic chaos that is our life. We finally have two more pieces to add to the ever-changing puzzle that is Emerson Porter.


Emerson with post-nap hair


First, I had an illuminating meeting with his occupational therapist. At the end of last year she handed me a thick packet and instructed me to fill out Emerson's daily activities, along with any related problems. I have to tell you, detailing all my frustrations and struggles was one of the most cathartic experiences I've ever had!

When I handed the completed packet back to her a few days later, she thumbed through a few pages and said wryly, "You guys are having fun, aren't you?"

I snorted. "Yeah."

She promised to get back to me with suggestions, but between summer break and some family issues she was facing, I didn't hear anything until the end of August. In the meantime, the process of writing down all our problems had given me an idea to do a picture schedule. (I'll write a separate post about what that means later, along with posting some pictures.) But when the OT called me, her suggestion was...you guessed it...a picture schedule! For once I was actually an on-the-ball parent!

This was not the good news, however - that came when she offered to meet with me to see what I had done and offer advice. Unlike some of his other therapists, the OT is more blunt and straightforward, which I appreciate under the circumstances. One of the first things she said was, "Emerson is not an easy kid. I hope that makes you feel better."

I laughed, "Yes, it does!"

I appreciate it when people try to make me feel better by pointing out how cute and sweet and fun Emerson is, but it's also nice to have my frustrations validated once in a while. It's nice to hear someone say, "I get it. I get that some days you want to scream, pull your hair out, or take a Greyhound to Alaska so you can start your life over again as a truckstop waitress named Marge."

She offered me a wealth of advice, from picky eating issues to social situations to making his new-found interest in tv an asset rather than a guilty indulgence. Most importantly, she confirmed that his sensory issues are related to his poor vision and not a whole new diagnosis of sensory processing disorder. I also asked about autism since no one has given me a straight answer so far. Frankly it hasn't been a huge concern of mine lately, but I wanted to know her opinion since she is on the autism diagnostic team.

She was taken aback that I asked and that the other therapists hadn't told her I was concerned about this. (Had I known sooner that she was on the diagnostic team, I would have gone to her first!) She told me an unequivocal no - he does not have autism! FINALLY someone gave me a real answer, even if it was just eliminating one of many possibilities.

This meeting made me realize something else - I need to start bringing tape recorders to document these kinds of conversations. She told me a lot of information about why she doesn't believe he has autism, but I can't recount it now because I was too busy trying to appear as if I wasn't choking back tears. And it didn't matter because halfway through her speech she started wiping her eyes and saying, "You're making me cry too!"

I'm such a freakin' baby.

The second bit of good news (is anyone still out there reading this novella? Hello? Oh well.) I took Emerson to his speech evaluation at UM hospital. They only offered me one time - right in the middle of nap time of course - but I suppose it's better to show his worst side during an eval anyway. Despite not being at his best, the therapist did not think he has Apraxia, although she cautioned she can't rule it out until he can say more words so she hear how he pronounces them. She did diagnose him with a slight receptive language disorder (ability to understand language - he was actually within the normal range, but she wanted to give him that diagnosis so that she could include some receptive language goals) and definitely an expressive language disorder. She explained that they have to call it a disorder for medical billing purposes, but her sense was that it was actually a delay - meaning he will catch up in time. Yay!

She gave me some diagnosis codes and advice on how to deal with the insurance company, which helped me to finally get the answer I was hoping for. They do in fact cover that facility, so we are on the waiting list to start services. The evaluator told me the school early intervention would be enough therapy if insurance didn't cover the hospital, which was nice to know. But since it's covered, I want to make sure we get all the extra help we can! Now I just have to figure out how to negotiate that damned hospital parking lot on a weekly basis...(does anyone else think it's insane that hospitals now have valet parking? Even for patients?)

So that's all the news that's fit to ramble about at our house. The boys have hit several milestones this past week as well, but I'll write about that later. For now, here are some more random pics:

Life at our house includes a lot of wrestling.


Fionn prefaces his attacks with a shrill battle cry.




Can you see my joy at being an oasis of estrogen in a sea of testosterone?