I Moved!!!

I finally made the change, so please visit me at:

http://www.allbino.blogspot.com/

This blog will still exist, but I will no longer update it.

We're Embracing

I am deep in the trenches of parenthood - up to my elbows in literal and figurative muck. Just today we finally caught up on our laundry after a simultaneous, family-wide bout with the stomach flu last week that soaked everything. It set in on St. Patrick’s Day, so we got to relieve our college days – the vomiting part, not the drinking part.

We are committed to getting Emerson fully potty-trained this month, so we spend all our time rushing him to the little potty and begging him not to touch anything in public bathrooms. Our goal for Fionn is to get him to sleep in the crib next to our bed instead of being in our bed, so nighttime has been a battlefield in and of itself. He also recently learned the word “NO!!” so that’s now his answer to everything.

There are times when both sides lay down arms and peace reigns once again. Emerson is making huge strides in speech therapy and got a positive progress report from school. Fionn is staying on track with his milestones so far and is a master of flirting with women of all ages. Every once in a while the two of them take a break from pushing each other and actually hug. It usually only last a few seconds before Fionn releases his war cry and throws Emerson to the ground, but we’ll take what we can get.

My children are many things, but they are never boring. Fionn keeps up constantly moving and Emerson keeps us constantly guessing.

A couple of weeks ago during Emerson's private speech therapy, the therapist pulled out a doll house and a family of dolls. Emerson has become fascinated by pretend play, so I wasn't surprised when he snatched up the mom and dad right away. I was surprised, however, when he mashed their faces and bodies together in an apparent display of affection. At first I beamed with pride that my son was so loving.

He had been doing this a lot lately...Thomas the Train needs a drink and blanket...Elmo puts the fireman on his lap for a cuddle (why does that seem dirty in print?) And now this.

“Aww...are mommy and daddy hugging?”

When mommy and daddy wouldn’t stop “hugging,” I started to squirm. The therapist tried to convince him that mommy needed to go up the stairs or that daddy wanted to sit at the dinner table, but he ignored her.

We both started giggling uncomfortably. “I guess mommy and daddy are busy...embracing,” she smirked.

She decided to forcibly take daddy out of his hand and replace him with the baby, but Emerson screamed in protest. As soon as daddy was returned, the couple was going at it again.

My mind started racing...Robbie and I weren’t that physical in front of the kids. Had PBS gone x-rated and I failed to notice? Where was my friend who’s a sex therapist when I need her?!”

I was just about to tell mommy and daddy to get a room already when the therapist took pity on me and removed the doll house altogether.

“Let’s play with balls instead.”

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Yesterday, our Vision Teacher came to see Fionn for his monthly home visit. As he was busy playing with the toys, she and I got to talking about Emerson’s progress. She visits him once a month at school and once at home, so she often provides me with useful information about what’s going on at school.

She confirmed that he’s making a lot of progress and that the teachers are anxious to accommodate his needs. For instance, during group time he sits next to the teacher and/or they make him his own copy of the picture they’re working with. As you can see in the recent pictures I’ve posted, we got him specialized, rose-tinted eyeglasses that cut down on glare and the harshness of fluorescent lights. Both his school and vision teachers say that it’s helping his ability to make eye contact and look at pictures.

The VT mentioned that teaching him to use the white cane has also been great. We’ve talked about this in the past few weeks, but for some reason I suddenly felt a little melancholy. Partly because it’s strange to think he’s learning something so important when I’m not around and I haven’t even seen him do it yet. And partly because the image of him walking around with a cane is a vivid, inescapable reminder of his low vision.

The teacher mentioned that during next week’s home visit, she would bring his cane from school so we could practice with it in our neighborhood. I agreed that it would be helpful for him to expand his practice environment and helpful for me to know what the cane was all about. The melancholy started to dissipate.

Then she talked about how the teachers at his school let him lead the class with his cane whenever they move from one room to the next.

“He loves to explore things with his cane,” she gushed. “And it’s hilarious to watch because all the kids are holding onto a rope, so wherever Emerson goes, they all go. From far away, all you can see is this line of preschoolers zig zagging drunkenly down the hallway!”

I burst out laughing and the melancholy was gone. Things aren’t perfect...most days it feels like we’re losing the war...but the unexpected keeps me going.

As Luke put it, Can the blind lead the blind? Shall they not both fall into the ditch?

Probably. But we’ll have fun along the way.

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.

Suggestions Please!

So every once in a while I have to change something on the blog...just because I can I suppose. What's really bugging me right now is the title and/or the domain name. It's hard to explain to people that Biner is not our last name but actually a strange nickname derived from my husband's attempt to make "albino" less offensive. I guess the humorous companion to the nickname people with albinism have for normally pigmented people: pigmentos.

I want a name that reflects the new attitude I'm trying to adopt: not the pessimist of the past or the unrealistic Pollyanna, but the wanna-be-hip mama that takes special needs in stride. The kind of outlook that kicks ass and takes names. (And to show you how far I've got to go - I had to google that phrase to make sure I had it right. Thank you urban dictionary!)

The best I can come up with so far is "Shera and the Short Bus." But this name only makes sense to girls who were born in the 80's and it's not entirely accurate since Emerson actually takes a huge bus to preschool. So hopefully you can see my dilemma and offer some more creative suggestions.

I'm happy to offer a reward to the person with the best idea. Let's see what my skills are...if you are local, I can babysit or clean your house. And if you're not local, I can edit term papers or help you craft a sermon. (I said I had skills - I didn't say they were useful.)

"That" Kid

The boys try out the dog bed.

A couple days ago, Emerson came home from preschool in a Red Wings Jersey. This was a "spare" shirt I sent with him on the first day of school in case of accidents, so I went fishing for the inevitable note in his backpack. Sure enough, his teacher had enclosed a short letter explaining that after using the toilet, Emerson "was doing some spinning" before flushing, but lost his balance and fell in. Hence a soaked shirt.

Robbie and I exchanged looks and then burst out laughing - not because of the story itself, but because his teacher was so matter-of-fact about him spinning before flushing the toilet. Whether it be randomly spinning before flushing, licking his knees, or walking around the house with a plastic tub on his head - it doesn't take long to get used to his oddities.


Emerson's favorite activity - looking at his reflection in the school garbage can.

Robbie and I exchange a lot of looks that say "oh god, he's that kid." By that we mean the kid that is playing dragons and aliens by himself on a corner of the playground while other kids play basketball or tag. The kid that whispers strange things under his breath or wears the same outfit for several days in a row.

Don't get me wrong - Robbie and I both have plenty of childhood pictures that attest to our own history of dorkiness. And frankly that kid is often the one that grows up to be a brilliant artist or billionaire CEO, so it isn't necessarily bad. But as parents, of course we want his social life to be as painless as possible.

Despite the jokes and our underlying fears, I am starting to wonder if our theory is even right. The more often I see Emerson is social situations, the more I see a future class clown. He does undoubtedly weird things, especially when he's under pressure to socialize (i.e. when we introduce him to someone for the first time, instead of just saying "hi," he might make a goofy face and then do a dramatic stunt fall), but I also see him feeding off the attention.

It's hard to know what social pecking order he'll eventually fall into, but one thing is abundantly clear: his view of the world is unique. I wish I could see what he sees or hear the thoughts he's thinking. As one of his teachers once said during a PT session, "Emerson, I love you. I just never know what you're going to do next!"


My little Fionn, on the other hand, has very clear social skills. He mixes his unruly white curls and cherubic cheeks with a sly smile that can get him pretty much anything he wants. And if he doesn't get what he wants - watch out! He's charming, dramatic and conniving all at once.

Future politician?