toddler

The eyes don’t have it.

Posted on by amberhj

I’ve always been proud of my perfect vision. I’ve bragged about it openly, and came to appreciate it even more after Stella’s visual challenges revealed the complexity and wonder of human eyesight. “I’m so lucky and blessed,” I thought, darting my hawk eyes around to appreciate my crystal clear view of life. Turns out it’s not that simple. News flash: My vision is decidedly imperfect. And if I hadn’t been so blinded by pride, perhaps, I would’ve realized it a lot sooner. But the realization didn’t come until Stella’s in-office vision therapy session today.

If you saw one of my recent posts at Little Four Eyes, you know about Stella’s experience with the quoits vectogram and how it showed that she can see in 3D! Well, today we did the same exercise, with a twist, and it showed that while Stella has a decent amount of stereoscopy, she has a hard time recovering 3D vision if the therapist “breaks” the illusion and then brings the sheets back into place for stereoscopic viewing. It takes Stella a long time to re-fuse the images after briefly losing fusion. It’s something we can work on, and greatly improve, according to our vision therapist. I feel confident that Stella will overcome this issue, and it helps that Stella was a rock star during vision therapy today. Her hand-eye coordination has come so very far. You should have seen her throwing beanbags into squares, tracking fluffy bumblebees, honing in on moving light-up targets, and stringing beads onto wobbly string! A thing of beauty, I tell you! Because of her improvement in this area, I’m now to shift our at-home vision therapy efforts toward making her eyes work across longer distances. Don’t ask me how I’ll capture her attention across the room. At times, I can barely achieve this with my face directly in hers. A way will be found, after much frustration and shouting in a chipper voice and bribing with chocolate chips. Or whatever.

At the end of today’s session, in an effort to help me understand the quoits vectogram, Stella’s vision therapist let me put on the polarized glasses and do the exercise myself. Drum roll, please… My performance was shockingly poor! And you know, I could tell before the therapist said a word. During the exercise, I sensed that it was taking my eyes (brain?) a long time to fuse the images. Simply put, it was difficult. “Maybe I have a vision problem,” I thought out loud, barely believing my plainly less-than-perfect eyes. According to the vision therapist, Stella actually performed better than me on the initial fusing of the rope circles! It took me longer! It seems I suppress input from one of my eyes when challenged to track closer objects and movement, but my eyes don’t cross the way Stella’s do. I’m guessing that’s because I don’t have Stella’s farsightedness, which puts extra stress on her eyes.

I was in shock! Sort of. But then I thought about a few incidents, and the testing results made sense. When I was in middle school, I tried refereeing a little kids’ soccer game. Fresh air, sunshine, control over younger humans–it seemed like the perfect way to earn money! But I forgot to add “barrage of insults” to the list of perks. The parents hated me, and heckled me like Red Sox fans at a Yankees game. It. Was. Brutal. They were a-holes, yes. But they weren’t wrong that I sucked. I absolutely could not follow the action close enough to make calls. Apparently, as the parents of one team made painfully clear, one kid was checking everyone else constantly. Oh I tried. But no matter how close I got or how hard I tried to lock my eyes on him, I just could not see what the parents were seeing. I couldn’t follow along, couldn’t catch the little movements. In a way, I felt blind. Clueless. Didn’t help that the parents turned me into their punching bag–that doesn’t tend to sharpen performance, you know? I still fume when I think about that, and if I could rewind my life and go back to that fall morning, I’d handle the scenario soooooo much differently. It would’ve involved a string of obscenities and several disturbing gestures. Perhaps assault with a deadly whistle. Nothing those kids didn’t see at home with their wildebeest parents, I’m sure.

Come to think of it, the same tracking issue plagued me during my sports career. Basketball was my passion, but I played pretty much on instinct and with general, big-picture court awareness. I swear that I never actually looked at anything in particular. I didn’t look at the basket when I shot, I didn’t look at the ball directly as I caught it. I didn’t look at my receiver when making a pass. Never actually even saw specific people in front of me while running a play as my high school team’s point guard. It worked out okay, but I was limited. I always wondered why I couldn’t get to the next level and become a really savvy, strategic player. I had the feeling that there was a deeper level of the game I couldn’t access, and it was frustrating. My husband doesn’t have that problem. He’s a fantastic, very tuned-in point guard who can watch individual players and movement and see the small details within the flow of the game. All I had was a very general sense of what was going on. Even though my eyesight has always been 20/20, somehow, it was foggy.

I now hope that, when all is said and done, and vision therapy and patching and early childhood are behind us, Stella will wind up with better vision than me. With her glasses, anyway. I couldn’t be happier (or prouder) about that possibility.

Excuse me while I go schedule an eye exam. For me. How refreshing.

 

 

 

A quick chat with Stella

Posted on by amberhj

Me:  “Let’s get ready for swim class!”

Stella (pensive):  “There are babies in the water… I’m a baby.”

Me:  “Well, you’re not such a baby anymore. You’re getting so big!”

Stella:  “I’m getting HUGE!”

Me:  “Yes, you’re growing every day!”

Stella (dreamily):  “I’m a flower.”

Me (smiling ear to ear):   “Yes! You are.”

Hoo! Boo! And booyah, too!

Posted on by amberhj

A seven-year-old ninja told her she was a hoot. Success!

Stella fell in love with Halloween. She said “Trick or Treat” and “Thank you” and “Happy Halloween” at all the right times. She noted and appreciated everyone else’s costumes, even the less impressive ones. Like the dad whose costume was simply his regular jeans and flannel with an orange T-shirt featuring a simple jack-o-lantern face. “He’s dressed like a pumpkin.” Regarding the little girl dressed in an over-the-top gorgeous, homemade cupcake get-up? “She’s dressed like a cupcake.” Everyone was dressed like something, even if they weren’t, and Stella narrated every detail in an objective tone. She went trick-or-treating for about two hours. At stores and at houses and at the zoo. It was a very full and wonderful day. Honestly, I used to hate this holiday. I now adore it.

Everyone fell in love with Stella’s costume. Which I made, thanks to fabulous inspiration found in alphamom’s “Last Minute Kids’ Owl Costume” post from last year. I’m kind of embarrassed at my level of pride. When asked if I made her costume, I’d absolutely exclaim with glee, “YES! I DID!” What can I say? It’s the most creative thing I’ve done in years. Along with our jack-o-lantern crew, which represented an organized, thoughtful creative collaboration with Cody. Involving brainstorms, sketches and check-in meetings. We should totally start an agency specializing in pumpkin advertising. I’m going resist saying it would be such a hoot.

A new take on "boohoo"?

Anyway, instead of an owl mask, which Stella would not tolerate for more than five seconds, I came up with an owl hat. I found a secondhand fleece Gap hat at a consignment store, removed the pom pom, turned it inside out to get a plain brown canvas, and crudely hand-stitched some buttons and pieces of felt to the front so as to create the owl eyes and nose. As alphamom suggested, I used fabric glue to attach the feathers to the shirt, because I don’t own a sewing machine and haven’t used one since middle school. Again, the sense of accomplishment I got from this was out of control. But the best reward was seeing Stella running around, flapping her arms and hooting in delight.

Speaking of rewards, besides candy and owl-inspired antics, Stella’s vision therapy seems to be paying off. I just wrote a post about her recent breakthrough. So please check out my latest post on Little Four Eyes to learn all about quoits vectogram and the therapeutic value of owl feathers.

Hope your Halloween was wonderful, too.

A crime of passion. A lesson for us all.

Posted on by amberhj

It happened in the glow of our large flat monitor with the two dead pixels, which have long taunted us with their bold red hue. Stella freaked out, both passionately and oddly, flailing her arms around her head and wailing out of apparent discomfort. A powerful emotional display for a fit based on what seemed like extreme annoyance, rather than searing pain as an onlooker might have assumed.

She screamed, completely outraged, “I’M TOO BIG FOR THIS!!!” If she’d flowed into a monologue, I’d have heard rants about deep injustice and the heavy hand of parental control squashing her inalienable rights and unflinching conviction that she is no longer a baby. I’m sure of it.

Or was it more simple? Was she referring to the “Elmo Rides a Tricycle” video we were viewing together on YouTube? Was I insulting her intelligence with this media selection? It was eye patch time and Elmo had never failed to secure her cooperation. Were those days over? Or was he the inspiration for her rebellion? After all, the tricycle song is not about the act of riding so much as it is about freedom. Something I’d considered innocent now appeared insidious. Questions raced through my mind while those dead pixels continued their mocking stare.

But then, as quickly as the storm erupted, it passed. She went back to scrutinizing Elmo’s amusing antics, entranced once again by his simple joy. It was as if her tantrum switch had been flipped suddenly to “OFF.” I breathed a sigh of relief, and left the room to go prepare myself for our errand-filled morning. Crisis averted.

Or was it? When I came back, the meaning of her earlier, indignant outcry was shockingly clear. There on the floor, next to the stained office chair where she was perched, was a gory spectacle. Her beautiful French eyewear lay dead, brutally squashed and ripped into two damaged pieces. DOA. The hinge on the right cable had not only been stretched back far beyond its capacity, but also twisted violently. Horrifying. And she’d waited until just the right moment, after I’d departed, indicating premeditation. The office, once reserved for couch cushion bouncing and mindless online escapism, had become a crime scene.

But, dear jury, was Stella the perpetrator or only a victim herself? She had experienced a huge growth spurt in recent months–why did I not realize this would include her head? Oh I’m fooling no one! Dear God, I must confess! I knew Stella’s glasses had gotten tight. I knew! But I did nothing. I stood by while Stella’s head was squeezed mercilessly by those spectacles. Now we’re all paying an emotional and financial price. For shame, mother. FOR SHAME.

As we lay Stella’s ninth pair of glasses to rest, I’m compelled to help others learn from this tragedy. If you’re child says they are too big for something, they mean it quite literally! Size up for Christ’s sake!

I rest my case.

Cirque de Okay

Posted on by amberhj

My official assessment is that this week’s in-office vision therapy went well. It was interesting, and eye-opening. (Once again I’ve let you down and resorted to puns.) Eye-patched Stella threw a couple blocks in frustration and engaged in impressive evasive maneuvers, but we managed to reel her back in while avoiding a fight. We totally persevered. It felt like a small victory for all of parentkind.

Helpfully, as the session got underway, the vision therapist answered all the questions I’d been asking, having gathered input from the doctor in order to do so thoroughly. And from there, she wisely kept things moving right along from exercise to exercise. In that way, Stella’s in-office vision therapy equates to a miniature three-ring circus with acts designed to mesmerize only toddlers. Imagine a large beating drum in the background and super dramatic announcer voice: “AND NOW, the great spinning disk of wonder three inches off the ground!… gasps and applause… AND NOW, the neighborhood’s tallest block tower, assembled and destroyed before your very eyes!… more gasps and applause… and now, feathers falling from the heavens… entranced silence, some “oohs,” then applause… etc. etc.!”

Here at home, Stella’s vision therapy is also a circus–one in which the elephants, lions and monkeys have escaped and are trampling the ring master and audience. It’s almost impossible to keep the show going for more than three minutes, so we do home-based vision therapy in small stints or whenever she shows interest. Sometimes, she even asks to do eye patch games! Yep. My heart almost stopped the first time she requested vision therapy. In order to better seize these moments, I pre-cut and keep handy eye patches of Magic Tape that I can quickly slap on her glasses’ right lens. Previously, I’d to stop the presses, take off her glasses, put two pieces of tape on the right lens, then carefully and annoyingly cut off the tape edges around the lens resulting in tons of tiny pieces of tape stuck to my fingers and scissors which is utterly unhelpful when you are in a major hurry in trying to take advantage of a very small window of  toddler attention.

At this week’s appointment, opening acts included a matching game–simple but smart in that it forced Stella to hold an image in mind and then scan the floor for its equal. Then, there it was. The therapist brought out this large spinning disc with slim, straight back and white stripes. On this briskly rotating table, the size of a super duper extra large pizza, the vision therapist placed some small colored blocks. Stella’s job was to snag whichever color the therapist dictated. It took a moment to teach Stella to resist grabbing the disc and to only touch the blocks. “Okay, Stella! Get the red block! No, not the table, the red block! You can do it!” She got a couple, placing her hand on them and slowly dragging them off the disc before falling into what looked like a state of hypnosis. So I put her in my lap and gave her a little pep talk/verbal assistance.  I did not, of course, help her get the blocks off the disc. I did say, “Ooh… here comes the blue block… here it comes…. here it comes…” to help keep her engaged and tracking. She got through about three rounds of this exercise (six or so blocks per round)–HOORAY! It was clear, and interesting, to me and the therapist that this was extremely challenging and exhausting for Stella. She almost fell asleep as the therapist stashed the disc away, a marked change from her energy level immediately preceding. We’re talking a full-on daze and string of yawns. Those moving stripes forced her to work so hard to focus, and it took a lot out of her. Even with Stella’s frustration level climbing higher due to fatigue, we plodded steadily through more “eye games.” But she did all the exercises presented. Some more easily, accurately, and agreeably than others. But she hung in there.

The imposing disc of wonder wasn’t the only overt difficulty. In particular, Stella seems quite uncomfortable tracking things that fall from just a couple feet above (with her left eye, anyway). She doesn’t even want to look up for the “balloon game” anymore, wherein I simply toss her a balloon from my standing position so that it falls right toward her hands for catching. But with a small but fun bit of dancing around with scarves and feathers, the therapist got her to follow their descent with her eyes and catch, with me holding her arms to receive them. Chalk up another victory for Stella’s left eye! And hope and sanity.

The session–the stretch following the disc exercise, anyway–reminded me of my basketball-playing days. Early on I was taught to practice free throws after games or drills, when my arms and body were nearly depleted. Because that’s how you get good, that’s how you become consistent, that’s how you hit the winning free-throw at the end of a long battle of a game. “Stella’s left eye is going to be a champion and leading scorer,” I thought! But that’s not QUITE how it’s going to work with Stella’s vision therapy at this point. The therapist noted that she’d save the more tiring exercises for the end of sessions in the future, so as to lower Stella’s frustration level throughout. This makes total sense, doesn’t it? It’s important for Stella to feel motivated or at least willing to go on. If she starts to feel more defeated than successful, her resistance would surely skyrocket. No, thanks!

This week’s vision therapy appointment granted me a couple realizations. First off, good vision therapists and good mothers have a core attribute in common: a careful balance of assertiveness. You can’t use brute force and you also can’t let the kid off the hook. You have to be firm, consistent and persistent, while mindful of the temperament of the individual child. Secondly, the fact that certain exercises are so uncomfortable for Stella made me understand how hard sports or perhaps even reading would likely be for her without the help of vision therapy. I don’t know if we’ll achieve visual perfection, but I have faith that Stella and her eyes will be very much okay.

With feathers, spinning circles, constant encouragement and gentle but insistent correction, we are preparing Stella for the visual demands that lie ahead in the circus of life. “…AND NOW, the social interaction and focus-requiring structure of preschool!… hearty applause… AND NOW, organized athletics of some kind…borderline obnoxious cheers!… AND NOW, completion of a puzzle without angry tossing of the pieces!… And the crowd goes wild!“

Our vision therapy experience so far… on littlefoureyes.com

Posted on by amberhj

Just a note to say that if you are interested in how our first two weeks of vision therapy have gone, you can get the details over at littlefoureyes.com. I just wrote a post about how we wound up doing vision therapy at such a young age (24 months old), and the benefits and challenges seen so far.

In short, office visits go well, but I’m having immense difficultly getting any home-based vision therapy accomplished. They tell me this is normal for her age, and that as with the glasses and patch it simply takes time to get into an accepted routine, but it’s absolutely maddening. In desperation, I spent $60 today on toys that mimic the activities we do at the vision therapy office. Should’ve just put the money in a blender and commanded her try to reassemble the bills. Would’ve had the same level of success.

As usual I’m trying to stay positive. I know I can be more creative in figuring out new “eye games”–without breaking the bank. Maybe tomorrow, I’ll have her (with her patch on, of course) send toothpicks through the holes in our strainer! Any bets on how long that activity will last? If I can keep it going for one minute, I’ll consider it an enormous victory. Meanwhile her fancy wooden Click Clack Tree is a gorgeous living room accent and conversation piece, when she’s not putting the ladybug balls directly in the landing spot at the bottom. Why bother watching them cascade (with excellent eye tracking, like the kid below) when you can cut to the chase? Honestly, though, she does like this toy and the small colorful blocks I bought for her to stack, and I’m still holding out hope that she’ll get some real use of out them. I scatter the ladybug balls through out the room and challenge her to find a specific color, and put it in the ramp, one at a time. She just doesn’t quite want to follow my specific instructions. Go figure!

To be continued…

Rough patch

Posted on by amberhj

This is a rather tedious post. But I can’t help it. Understanding Stella’s visual issues involves a level detail that hurts my head. I have to give each individual brain cell a pep talk before attempting to absorb anything.

Tomorrow, we will attend Stella’s first session of vision therapy. I am nervous, excited and hopeful. At the same time, I’m confused and scared, because I suspect Stella’s eyes are getting worse. She’s been taking off her glasses and rubbing her eyes a lot more lately. It’s harder and harder to get her to wear the patch (Magic Tape over her glasses’ right lens, so as to make her weaker left eye work harder and get stronger). I think her eyes crossed today while I was changing her diaper–and her glasses were on. Not good. I wonder if her prescription needs to go up. A very optimistic part of me that rarely sees the light of day (for good reason, probably) wonders if the prescription might need to go down, but that makes little to no sense. I wonder if patching is somehow making things worse, namely by weakening her strong eye. Something is OFF right now. I can just tell. I don’t feel so sure that we’re on the right track anymore. I thought I had this pretty much figured out, but not anymore. I’m terrible at dealing with uncertainty. But nothing is ever certain, is it? Sucks to be me.

The specifics about Stella’s vision issues are still annoyingly hazy to me, which I can barely stand. I’ve been trying to read studies but have a hard time making sense of them nevermind applying them to Stella’s unique visual situation (which again, I don’t fully understand, so how to know what research applies to her?). I’ve emailed her doctor, only to get brief, confusing replies that include attempts at reassurance without any real clarity. It’s frustrating as hell. There are conflicts between what different doctors have told us and I’ve never been able to fully reconcile it all. I have so many nagging questions–some are specific with answers that exist but are currently just out of reach, and some are broad and probably unanswerable:

If her good eye is being covered for three hours a day, could its vision be suffering? She’s been rubbing it.

If her weak eye is improving due to patching, shouldn’t her glasses prescription adjust sooner rather than months later at her foll0w-up appointment?

Since she is not wearing her glasses or patch as well and seems to be having more trouble with her eyes, do we need to schedule another exam?

How do her conditions of farsightedness, strabismus (accommodative esotropia in her case) and anisometropia (unequal refractive power) play off each other or cause each other? I want to understand the relationship between all these terms, and why her brain is tuning out one eye. I don’t quite get it.

Does Stella have full-on ambylopia or is she just headed toward it?

Why, after she started wearing specs, did Stella’s brain start to favor her strong eye if the glasses supposedly accounted for and corrected her vision in both eyes, with extra correction for the weak eye? Shouldn’t glasses have prevented this?

Why didn’t Seattle Children’s Hospital even mention vision therapy?

How did the ophthalmologist at Children’s Hospital know that her weaker eye was “starting to be tuned out by her brain”? All they had Stella do, in order to determine this, was look at giant gray cards with teeny, tiny holes in them. They did her strong eye first, several times with several cards, then her weak eye. What if by the end of this boring exercise, she just stopped paying attention, being not quite two years old at that time? They said there was a “one card difference” between her eyes. What on earth does this actually mean?

Does Stella have 3D vision or not (one office seemed to think so, another didn’t)?

If much of binocular vision is established by age two, though it can be corrected later, shouldn’t she have pretty good vision since her issues didn’t start until around 18 months and the crossing has been very rare (“intermittent”)?

Or, are her eyes crossing slightly all the time and I just don’t notice it? Current doctor says yes, her eyes probably are crossing and I just don’t notice. This made me sad and almost drove me insane. I didn’t think this was true, based on what the doctor at Seattle Children’s told me.

Relatedly, why the F is she wearing glasses if they’re not preventing crossing and her weak eye is getting worse anyway?

What exactly will vision therapy fix?

Are my hopes too high (for vision therapy)? They are very, very high. I can’t help it. (For those that have been following Stella’s journey for a while now: Vision therapy is the new Graz.)

Are my worries too big (again)? They are growing all the time.

It just never ends, does it?

Fashion visionary, so to speak

Posted on by amberhj

Right before Stella began wearing her fabulous French glasses, we purchased this (currently sold out) onesie from Threadless:

The "I Love Fairy Tales" onesie from Threadless

This is the "I Love Fairy Tales" design from Threadless. If you look closely, you'll notice small wings coming out of the bespectacled frog's mouth, and a tiny wand on the ground in front of him. Look even closer you can see the yogurt that Stella had just devoured.

Soon after Stella started patching, I found this beauty at Hanna Andersson (we got the onesie but they make a shirt version, too):

Pirate Girl Onesie from Hanna Andersson

Stella LOVES this thing. She keeps pointing at the skull and crossbones (complete with a pink bow) while saying, "Pirate girl! Wearing heart eye patch!" Which sums it up quite nicely.

Pirate girl onesie

Okay I just had to throw this shot in, too. I just like the pose. She was pretty delighted about her look. The onesie, rain boots, and black leggings totally WORK. On her. I could never pull this off.

Who knew visual challenges would wind up being such huge fashion inspiration? But then again, as I always say, “When life gives you lemons, make them the palette for a zesty, cheerful new wardrobe.”

Note: Even though we bought a Canon SLR, it’s somehow often dead or too far away when impromptu photo opportunities strike. So as you can probably tell, these are all un-fancified iPhone shots–no effects or anything added because I’m way behind the times in that particular area, among others. Ah, well, she’s cute through any lens.

Stella is two.

Posted on by amberhj

Stella is two. She wishes she lived at the beach.

Stella is two. She wishes she lived at the beach.

Stella turned two years old last week, during our beach vacation. She’s still singing happy birthday to herself, talking about birthday cake, and reminiscing about blowing out candles and good times with her “Happy Birthday balloon with smiley faces.” The balloon was accidentally released into the sky, but the sight of it drifting to ever more impossible heights pleased everyone, including Stella, and somehow seemed appropriate and celebratory. I know what you’re thinking. “How nice!” and “Hopefully no sea animals were killed by the balloon remnants.”

So Stella’s two now. All of sudden, she talks in complete sentences, giving crucial information, and answering questions. (Yeah, she shouts commands, but mastered that long ago. I guess they’re just more specific now.) Though she can string words together like a champ, it’s the short one-liners I enjoy most. Must be the advertising copywriter in me. Some examples of dialogue:

Me, in response to her crying: “What’s wrong?”
Stella: “My belly hurts! And my knee.”

or

Me: “Where are your glasses?”
Stella (walks over to the table, where her specs sit): “Right there!”

or

Stella: “I’m running! I’m running down the street!”
Me: “Yes you are running! Running down the street!”

or

Stella (returning to room after leaving for 5 seconds): “I’m BACK!”

Now that Stella is two, she treats her glasses with more care. She usually takes them off with two hands and carefully folds them before handing them to me. We switched to using magic tape over her right lens, instead of a solid patch, at her ophthalmologist’s suggestion. That’s made patching harder, I think because her right eye is still getting input but it’s really bad input, instead of being totally blocked out. But overall, she’s patching like a champ. When she peeks over the top of the glasses, I say “No peeking,” and that usually stops it at least for a little while. I use screen time as the “patch game”… so if she peeks while watching say, “Here Comes Science” DVD, I say “No peeking,” and if she peeks again, I turn off the TV and say, “You’re peeking so the patch game is over.” It works pretty well! Stella’s doctor was very helpful in coming up with strategies like these.

Stella really likes to nap. She asks to nap often. I’ve heard patching causes strain that can make kids cranky and tired. Plus, we went on a long vacation that involved a three-hour time change. In any case, this kid knows when she’s tired, and I totally appreciate that.

Her raw/giant-carrot-chomping phase seems to have waned, but Stella is now eating lemons like they’re apples, waxy rind and all. Her current favorite foods are: chocolate ice cream, mac and cheese, vanilla ice cream, extra cheesy mac and cheese, sliced almonds, peaches, cheese in any form, ice cream, cottage cheese, bagels, and carrots. And ice cream and mac and cheese. We are so alike in some ways.

We gave her a really cute wooden play kitchen center thingee for her birthday. She loves it–washing dishes and putting lids on pots, turning stove knobs, and removing the faucet. I’ve been letting her play with dried beans and bowls and my large kitchen utensils for a while. She’s really kicking things up a notch now and pretending to cook. Though she hasn’t made anything but mac and cheese yet, I expect her to branch out soon, menu-wise.

Stella is completely, 110% obsessed with the aforementioned “Here Comes Science” DVD featuring music videos for science-centric songs by They Might Be Giants (TMBG). Against my idealistic intentions, I let her watch it every day, because it’s an effective way of launching the “eye patch game” (the game? wearing her patch). During vacation, she watched it two or three times a day. She watched more TV that week than the rest of her life combined. She was teething, jet-lagged, patching, and got a fever and gastro bug, so I just let her go nuts with it (though at times I really did just have to start cutting her off). It was all worth it because now I get to hear appropriately bespectacled Stella belt out scientific yet catchy gems such as:

“ROY G. BIV is a colorful man!”

“STEEEEEAM is a GAS!”

“Meet the elemeeeeeents!”

She is fiery and fabulous and has me by the balls. She’s sweet and strong and fast as lightening. She’s a ruthless tyrant and cuddly snuggler. A monkey and a mastermind. She’ll read book after book after book until the cows come home, then happily “moo” right along with them. I may be diagnosed with severe OCD for admitting this, but I say, mostly in my head but sometimes out loud, at least hundred times a day in the exact same way, “I sure do love my Stelly girl.” I really, really, really do.

***

For your enjoyment, in celebration of Stella’s 2nd birthday, here are the “music videos” (do they still call them that?) corresponding with the lyrics above:

ROY G. BIV

MEET THE ELEMENTS

SOLID LIQUID GAS

I’ll post a birthday pic

Free webinar by Susan Barry: How the system lets down children with vision problems

Posted on by amberhj

Here we go again. Like tube feeding, vision is an area in which children aren’t getting the care and solutions they need and deserve. Stella just started patching, because her brain was starting to favor her right (strong) eye. And it’s already become clear (fun with puns!) that without extra effort and research on my part, her outcome, even though we are patching as directed, would be far less than optimal. Thankfully, I have the time and ability and insurance coverage to make it all happen. But I keep wondering, what about the many parents of children with vision and feeding tubes and other health issues who don’t?

Luckily for us anyway, three recent and perfectly timed events have made me feel that I’m on the right track in terms of how to approach Stella’s treatment…

1.) We recently chose a new eye doctor for Stella (our third opinion became our number one choice!) who emphasizes vision therapy in treating eye issues like Stella’s (conditions like strabismus, accommodative esotropia, ambylopia, etc. etc.). She was vastly superior to the others in terms of her attentiveness to Stella as a human being, her ability to do vision therapy with the very young (our second opinion did vision therapy, but said Stella wouldn’t be eligible for years), and her support and tips on how to patch successfully. Seattle Children’s Hospital? They just handed me some adhesive patches to stick on Stella’s almost-two-year-old eyes, with almost no explanation or and certainly no acknowledgement of how big a deal it was, noting only that patching is “not that bad.” Bullshit.

2.) I’m currently reading a ray of hope in paperback form, Fixing My Gaze by neuroscientist Susan Barry. She couldn’t see in 3D until her late 40’s (she had strabismus from early on, like Stella). The ability to see in three dimensions affects life in a myriad of ways, including the abilities to read, drive and play most sports. The book is as much about neuroplasticity as it is about vision, and I have found most of it fascinating (some of it a bit dense and technical and hard to follow). It has opened my eyes (the puns are too easy to resist here, sorry) in so many ways.

3.) Yesterday, I received an email from Stella’s new eye doctor telling me (and all her patients) about a free webinar being given by Barry, author of Fixing My Gaze, on Thursday. I was thrilled! The email, besides letting me in on a great opportunity to learn from a true knowledge leader in the field, confirmed that we’d found one of the rare doctors who can help Stella achieve her own personal best in terms of vision.

The meeting’s name pretty much says it all: “School Crossings: A Neurobiologist’s View of How Our System Fails Children With Vision Problems.” I was so thrilled to find out about this, and again, to get assurance that we’d found a wonderful doctor for Stella. One of the rare few who are truly informed about vision therapy, the kind that helped Barry see the world in full, volumous beauty.

I have only a basic understanding at this point, though it’s growing all the time. But most opthalmologists (including the one we saw at Seattle Children’s) and optometrists seem to heavily rely on patching (often alone) to address situations where the brain is favoring one eye, as is beginning to happen with Stella. When the vision imbalance is left untreated, blindness in the weak eye is likely. However, patching is not a real solution or adequate treatment for many, as upon completion of occlusion, the brain slowly reverts to favoring the same eye. Both eyes are strong after months or years of patching, or have equalized (sometimes the strong eye deteriorates due its suppression) but the brain has not learned to use the eyes together. Vision therapy is needed to get the formerly weak  (“lazy” or ambylopic) eye to coordinate with the  strong eye and create a complete, stereopic view of the world. Proper therapy often results in a long-term cure, enabling 3D vision and other vast improvements. So many children are having to settle for significant, even quality-of-life-reducing vision impairment when in fact, they could see major improvement or perhaps complete resolution of their issues.

Many doctors still believe that there is a small window in early childhood during which eye problems must be addressed, lest be rendered irreversible. Barry’s research and personal experience shatter this falsehood. For the benefit of children like Stella, Barry is shouting her discoveries from the mountaintop, and I am extremely grateful. On the other hand, as we recently embarked on the patching journey, which I was not expecting at all–I was truly blindsided (ugh, another pun?), the book has scared me and made me cry. It’s made me realize the full scope of how Stella’s vision and life experience could be impacted if she is not properly supported. Seriously, I’ve been listening to Celine Dion’s “That’s the Way It Is” and bawling, about once a day. And I’m not a Celine Dion type of person. I’m a Neko Case fanatic. But, “it’s an uphill climb and I’m feeling sorry, but I know it will come to you, yeah” kind of hits the nail on the proverbial, three-dimensional head. I’m working hard and it feels like, once again, there’s a lot on the line and if I don’t stay vigilant and question everything every doctor tells me, Stella will suffer.

Anywho, I’ve signed up for the webinar and encourage other parents of children facing visual challenges to do the same! Virtual “seating” is limited. I will blog about the talk here, in case you miss it. The details, from the original email announcement from the College of Optometrists in Vision Development (COVD):

School Crossings: A Neurobiologist’s View of How Our System Fails Children With Vision Problems
 
Hear Dr. Susan Barry answer questions about difficult school experiences that resulted from her vision problems; how, for example, she was mislabeled as a low aptitude student and assigned to a special problems class, and what her mother did to help her child succeed. And more….. including what you can do to help your child succeed!

TO REGISTER FOR THE MEETING:  Go to www.joinawebinar.com, fill in the meeting ID number 547-423-251 and your email address, click on “CONTINUE,” then fill out the brief form that comes up next and at the bottom of that screen be sure to click on “REGISTER.” 
If you have ANY difficulty registering or any problems during the webinar, contact TECH support for gotowebinar.com at 800-263-6317.

Click here to read the full press release, including more information about Susan Barry (aka “Stereo Sue”).