strabismus

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…

Random Observations, because I’m trying to post more often

Posted on by amberhj

Once in a while, Stella calls me “Amber.” Deeply disturbing yet hilarious. Though, it totally sounds like she’s imitating Cody. She’ll be in the computer room yelling, “Amber! Amberrrr! I can’t HEAR you! AMBER!?” Yep, sounds familiar.

We finally programmed her obnoxiously chipper, stuffed pal Scout to say “Stella” and her favorite color (green), food (ice cream) and animal (currently, penguin). You should’ve seen Stella’s face when she heard him speak her name for the first time. In the ensuing days, they’ve grown a lot closer. Stella’s all, “Finally I’m getting something BACK in this relationship!” But seriously, it doesn’t get much better than this. The toy now inserts her name and the aforementioned key words into songs–with superb awkwardness. If he’s singing about his “favorites,” for example, and it’s time to mention “green,” the twinkly boppy electronic music totally halts, a few milliseconds of silence ensue, then you hear the word in a slightly different tone than Scout typically employs, followed by a touch more silence, and finally the song resumes as if nothing happened. To me, comedy gold. To Stella, validation of a friendship that for so long seemed one-sided.

Is it me or does Mad Men induce heavier drinking than usual? I’ve been indulging in proper cocktails lately. A couple per night for the last few days–mainly good margaritas including only freshly squeezed lime juice, 100% agave tequila, and Cointreau. Oh all right, I’ll admit I had four on Saturday night (two glasses of wine and two very strong margaritas to be exact). During that same span we’ve been watching one episode of Mad Men, the best show ever, per evening. It’s not working out. Don and company make it seem so effortless and normal–hard alcohol on the rocks is clearly a natural extension of any meal, meeting, or fleeting frustration. Well, even my low (by comparison) level of imbibing doesn’t seem to mix well with my anti-depressants or early toddler wake-up calls. So tonight I’m drinking chamomile while watching Mad Men. After I finish this lovely glass of rose.

As you can see in my twitter stream, I kind of told “STFU, Parents” (“one of the 33 tumblrs you NEED to watch” according to The Huffington Post) to STFU. Because of this. And by the way, “STFU, Parents” defensively tweeted back! Now, normally I think that the funny person behind this site does a pretty great job of picking the most wildly inappropriate, over-sharing parents’ Facebook posts to skewer (such as pictures of poo, complaints about restaurants not putting up with their children poking other customers with straws and other horrible behavior, placenta-related horrors, and so much more). I’ve shared the site on my Facebook page and converted others–I embraced it! “STFU, Parents” reminded me to keep my own online “sharing” in check, and I usually clicked away feeling pretty damned good about my own parenting, as in, “Well, at least I’m not that idiotic. I don’t change Stella’s diapers on top of restaurant tables, and I don’t purposefully run over people’s feet with our stroller, so I’m fantastic!” But then, in my opinion, the site’s author/editor totally misinterpreted an innocent comment from a well-meaning and most likely very hardworking mom, and it highlighted the dark side of that site. I mean, you can see it everyday in the comment section–some people just hate kids, hate parents, hate, hate, hate! They take the worst of the worst parental examples and treat them as representative of all of us. (Did I mention they loath us?) The site and its rabid followers held this woman in utter contempt–someone who was really only saying, “Yes! I’d love to be as productive as these amazing individuals. Then again, I am taking care of little kids at this point in my life, unlike those folks, so I’m going to cut myself some slack.” The site and its commenters jumped to a much different interpretation: “This person thinks that the world’s smartest and most accomplished people are of no value because they weren’t PARENTS!!!” How they got there, I’ll never know. As they say in advertising, it’s a long walk. I’m wondering if “STFU, Parents” isn’t more than an angry mob. Less fun, and more fodder for parental hate, when all the parents I know are working their asses off for their families (inside and outside of the home), sacrificing and worrying like crazy, and doing their best to raise wonderful kids who keep their straws to themselves. It all reminds me of a giant sticker Stella received from a blues singer, who took a liking to her as he performed on the sidewalk in front of the original Starbucks in Pike Place Market. It reads, “Ain’t no time for hate.” True. Ain’t no time for twittering about stupid bullshit either.

Remember how in a recent, sad post I admitted to examining hundreds of photos of Stella to see if the little white reflections of flash in her eyes were symmetrically placed so as to indicate alignment of the eyes? Well, I realized today that in the photo that was mercilessly cropped in order to fit in the header of this very blog, the tiny bright spots are in slightly different places within each pupil. This may be meaningless. Or it may mean that her eyes were misaligned, though maybe just ever so slightly, all along (least since six months of age, at least). And the enigmatic nature of Stella’s vision problem deepens! My brain is currently yelling, “Amber! Amberrrrr! It’s time to watch Mad Men. Where’s the tequila? Where is it? I can’t hear you! Amber?!”

This isn’t healthy.

Posted on by amberhj

I should’ve been asleep an hour ago. Instead of taking care of myself, I spent a bunch of this Friday evening, when Cody and I are supposed to be relaxing and celebrating our wedding anniversary, scouring photos of Stella from the time before her patch, and shots from more recent times. You see, I read somewhere that the little white reflection of the camera’s flash that appears in each eye have identical placement if the eyes are aligned. If the eyes are not aligned, those little bright spots won’t appear in symmetrical fashion. Thus my mission tonight has been to use photographic evidence to determine precisely when her brain started to favor her right eye–or prove that perhaps it never did. Just writing that sentence made my brain deflate like an impaled beach ball.

Underneath it all, I’m scared. During Stella’s feeding aversion and tube days, mistakes were made at Seattle Children’s Hospital. Even before we got there, I had to fight like hell and come to the brink of a nervous breakdown before anyone would help us. I’m terrified that Stella’s vision, and all the many, varied areas of her life that it affects, will suffer greatly if I don’t catch the missteps that seem sure to happen, if they haven’t already. I fear that without my total vigilance, pertinent information will fall through the cracks, bringing her eyesight and quality of life along with it.

Questions about amblyopia, stereovision, and all the other details pertaining to Stella’s eye issues poke at my brain and wrench my heart. I feel helpless because we’re taking steps to address a complex problem I don’t fully understand. I don’t feel confident. I’m not able to trust doctors so easily anymore. Even really good ones like Stella’s current developmental ophthalmologist. Maybe I’m a pain in the ass. Maybe I am crazy. Maybe I shouldn’t question everything.

But I just can’t help it. My love for Stella–it’s so big it makes me clumsy sometimes. Hopefully, I can find the strength to achieve better balance. On one hand there is a relatively objective quest for truly excellent care and solutions based on accurate testing and conclusions, the latest research and best practices from around the world. On the other, a ferocious protectiveness that emerges out of not only my vast love for her, but old trauma and new fears.

Sadly, our past experience taught me that at the end of the appointment-filled day, it’s all on my shoulders. If I’m lucky, there will be supportive voice or two, but no one who can help Stella without me there to champion her cause. No, I was taught that Stella’s outcome can’t be left for others to devise. Can’t be put in the hands of those who don’t see the nuances of her day-to-day visual reality, those who see Stella as another patient or chart and not the owner of the cutest toes ever to touch the surface of this planet.

I’m her mom. I look into her big eyes, the color of blue ocean made softer by partly cloudy skies, a hundred times a day to tell her “no screaming!” “good job!”, “you did it!”, “take turns!” and most often, “I love you!” I’m having a hard time letting go. I’ll never be an expert or an ophthalmologist, but I need more answers and education about Stella’s particular situation. Is it too much to ask to get a solid understanding? I don’t think so. I hope I can go about getting it in a way that builds bridges rather than creates tension with the wonderful people who can help my sweet Stella. And surely after that, with some work, I can let go and simply follow the path laid out for us. Not viewed through a lens of fear, but simply a watchful, hopeful, and much less exhausted eye.

P.S. Today, Stella and I did a good job with our daily home vision therapy exercises. We even had fun. I got an email from the vision therapist in response to my questions that was kind, helpful and with promise of more answers to come from the doctor.

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?

Because we just can’t get enough therapy.

Posted on by amberhj

It’s official. Today, I scheduled Stella for weekly, ongoing vision therapy. I feel victorious! As in, “We’re going to the Super Bowl, baby!” (I probably need to get out more.) You see, our second opinion (the first being Seattle Children’s Hospital, where vision therapy was never mentioned, and the third being our current doctor) told us that Stella was far too young to do vision therapy. (How many times can I say “vision therapy?” Let’s see, shall we?*) Also, as I’ve said a million times lately, I just finished reading Fixing My Gaze, and it got me so pumped up about vision therapy that I felt physically uncomfortable with the knowledge that we weren’t pursuing vision therapy. And not only has Stella been taking off her glasses more, she’s been staring into space and rubbing her eyes frequently, too, as she did before getting glasses. Now I’ll have someone to gauge Stella’s vision regularly, someone I can grill in person and upon whom I can dump all my concerns on a weekly basis. Hooray for vision therapy!

So every Wednesday morning, we’ll be headed out for some mindblowingly fun “eye games” (aka “vision therapy”). That’s my brilliant branding for this new adventure. Wearing an eye patch is currently called, “the eye patch game.” I know, I know. My advertising background is coming through in its full luminescence here, I’m a genius and I put Don Draper to shame. Yes, yes and yes.

Upon confirming our slot, the vision therapy office emailed me a preparatory doc entitled, “VISION THERAPY: What you need to know.” Highlights include:

  • Vision therapy programs are individualized. “Each session consists of 45 minutes of one on one care combined with a program of daily home oriented therapy.”
  • We will be given “vision therapy handouts and supplies for home therapy use that will change periodically.”
  • “The majority of patients in a once a week program are in vision therapy for nine months to one year.”
  • Progress evaluations must be scheduled every three months regardless of the number of vision therapy sessions that have taken place during that time.

I am totally bringing chocolate chips, maybe even a baker’s dozen from Trophy Cupcakes, to each session. Whatever it takes to reward and encourage cooperation! Stella is 24 months old and is going to be asked to “focus” (in one way or another) for 45 minutes straight. I know she can do it. I’ve seen her concentrate intensely on an enormous ice cream cone for at least that long. I know we can make it work and I know this doctor knows what she’s doing and is fully aware that Stella just turned two. I know I know I know. But (shockingly) I’m a little nervous. Kind of like that time I bitched endlessly and fought like hell to get a promotion, then when it was finally handed to me, I freaked out and realized I didn’t know what the hell I was doing. “Idiots! What were they thinking giving me all these new responsibilities! I’m not ready for this! Oh wait…”

But seriously, it’s all coming together. Another bit of encouragement emerged on Monday evening at our PEPS (Program for Early Parent Support) gathering. (PEPS is just a bunch of parents-to-be that get tossed into a group that starts meeting weekly once the babies are born, within a month or so of each other. Basically, for new parents, it’s a way of feeling less insane.) Turns out one of the mothers in our PEPS group had double vision as a child, mainly when tired–fatigue is also what triggers Stella’s eye crossing. She admitted that in an attempt to see clearly, she wound up walking around with one eye closed. Her mother got used to seeing this, and like most young kids she was very good at compensating for the vision problem. As a result, she said her mom pretty much let it go until a friend called her out on it. She was told to wear a patch, but her parents opted for vision therapy instead! My kind of people! She did vision therapy for a year at around age six and that did the proverbial (literal?) trick–it’s just amazing to me. She’s had control of her eyes, and no double vision, since. Her recollection is that the sessions were fun, with engaging activities, but that she felt very tired afterward. And, because apparently she can read minds and intuited my concern about Stella’s age, she mentioned that while she was school age during her vision therapy, kids of all ages could found in the waiting room. (Thank you, PEPS pal.)

This sort of discovery keeps happening! Stella’s glasses and patch have been the gateway to all kinds of stories about patching and eye crossing and visual whatnot from just about everyone we know, and even some we don’t. It’s news to us but apparently everyone has a sibling or close relative who faced the same type of vision issues in childhood. I should’ve known! In Fixing My Gaze, neurobiologist extraordinaire Susan Barry points out that about one in 25 children has strabismus or a binocular vision problem. That’s roughly one in every classroom. It’s become clear that Stella is in good company, and it all feels so normal now. Which blows my mind. Normal and I aren’t close but I’ve always wanted to get to know him. Some say he’s boring but I find him absolutely fascinating!

One other bit of insight I took away from that vision therapy handout: This shit is going to be expensive. Did I mention I’m looking for freelance writing gigs? Go ahead and picture me, out on the internet highway, holding a shabby virtual sign that reads, “WILL WRITE FOR VISION THERAPY.” See? Completely normal.

P.S. Found this at covd.org, a “World Health News Today” segment on vision therapy for children.

* Tally: 19 “vision therapy” mentions. 20 if you count that one. I can totally do better. Vision therapy! 21.

Takeaways from Dr. Susan Barry’s Web Interview (School Crossings: How the System Lets Down Children with Vision Problems)

Posted on by amberhj

First off, I have to admit that I entered the web meeting eight to nine minutes late. This will be the opposite of shocking to anyone who knows me.

I was infuriated! I’d been anticipating this thing to a pathetic degree and just finished Dr. Susan Barry’s Fixing My Gaze, a godsend of a book for parents of children with strabismus. (Click here to listen to the NPR story about Sue.) Unbelievably, I was at my computer two minutes before the start time. And only then did I realize I had to download frigging webinar software, and this computer hates me and therefore refused to install it despite several admirable attempts. So instead of thinking about it for two seconds, I called Cody, who was on a walk with Stella so that I could have peace and quiet during the webinar. (Is “webinar” really a word? If so, it shouldn’t be. I hate it.) He said, with no annoyance in his voice whatsoever, “Use the laptop in our bedroom.” So I literally sprinted into our clothes-strewn cave of a room and logged on to an ancient IBM ThinkPad. Thank God it worked, or I would’ve thrown lamps and other breakable items in frustration. Pile of clothing, at least.

Anywho. My coverage, as promised…

By the time I got to the party, hosted by the College of Optometrists in Vision Development (COVD), Sue (I guess I’ll be cozy and call her that) was recounting some of the background laid out in her book. She had 20/20 vision in both eyes. So, in the standard vision tests they give in school, where you read a chart of letters (20 feet away) with one eye covered and then the other, her binocular vision problem went completely undetected. It’s not just because one eye was covered so as to avoid revealing the inability of her eyes to work together, but like Stella, her vision was pretty much fine from far away (say, 20 feet), and not so sharp within a few feet. Because the vision test didn’t reveal the source of her low test scores, she was labeled as a “dim bulb.” Literally. Teachers told her parents to accept the fact that their daughter had low intelligence.  Sue, neurobiologist and author Sue Barry, Ph.D., was placed in a “special needs” class with an assortment of children with widely varying impairments and diagnoses. Side note: Sue’s best friend was physically impaired by polio, though she said it was quite obvious his intellect was just fine. Sue never raised her hand to answer questions because she had no confidence in herself. Thankfully, her mother never, ever doubted her high intelligence, and Sue saw and felt that.

Of course, Sue’s mother did more than merely believe in her. She took action that contributed directly to Sue’s later success. She read to and with Sue constantly. More than that, whenever young Sue expressed excitement about or interest in any topic, she would come home to find that her mother had placed a perfectly chosen book about that very subject on her bed. A little surprise, an eagerly opened treasure. Reading was fun.

Sue explained why her mother’s efforts were so powerful. If a person anticipates a reward for an activity, brain activity is generated that changes synapses. By making reading to rewarding and enjoyable, Sue’s mother helped shape her brain! Despite the fact that her binocular vision problem made reading much more difficult than for most, she became a slow but competent reader. She found joy in it, which propelled her through the visual challenges. I wish I could give Sue’s mom a huge hug, and perhaps a parade. Honestly, read Sue’s book. That woman went to bat for her daughter. Much respect.

I have to add that Sue and the moderator further discussed the topic of how to encourage reading in kids who, as Sue did as a child, find it uncomfortable and difficult. For most kids with vision problems that make reading taxing (but not impossible), total avoidance of reading and reliance on books on tape isn’t the answer. They suggested that parents and teachers simply be patient, and take it slow. Start with less challenging material until their confidence and endurance increases. Provide breaks during reading. Small efforts like taking turns reading paragraphs with your child can make a huge difference.

After recapping how her childhood was affected by her vision problem, Sue delved into the story of a boy named Eric (also shared in Sue’s book). For a long time, no one knew Eric had a vision problem. Eric’s eyes looked straight. He could see well from a distance. Bu his vision was poor when looking at things close-up, which made schoolwork frustrating and aversive. As a result, Eric was a poor-performing and distractible student who was diagnosed with and medicated for ADHD! This unfortunate mistake wasn’t corrected until they happened to visit a clinic (for kids with ADHD) that offered binocular vision tests. Only then did they realize Eric’s true problem. According to Sue, following vision therapy, Eric has gone on to become one of the top students in his college class.

The moderator helpfully asked Sue to name any key studies or resources that she could suggest to parents. She cited two:

Reading Strategies in Mild to Moderate Strabismic Ambylopia: An Eye Movement Investigation (published just this year). Key finding: These kids have longer fixations and less accurate saccades.

Randomized Clinical Trial of Treatments for Convergence Insufficiency in Children (a study by the National Eye Institute). This trial resulted in recommendation of a 12-week course of office- and home-based vision therapy.

Note: Sue also suggested that parents visit COVD.org to check out their “Research and White Papers” and reminded us that the chapter notes in her book are full of references to the wealth of research and studies cited.

Because the point of this “webinar” was to empower parents and educators to better support children with vision problems, the moderator (again, very helpfully) asked Sue what activities she found most enjoyable as a child. My ears perked up. This is about building confidence, and focusing on strengths rather than worrying about weaknesses! But when I heard what she said next, as she began her answer, I got a tiny bit sad. Because she explained that ball sports were difficult and not very enjoyable at all, as they involved demanding eye tracking which requires coordination of the two eyes. She just couldn’t follow the ball, puck or other fast-moving object well enough. So, while it makes no sense and we really don’t know what Stella’s vision will be like or if she’ll even be interested in sports, I got a little misty. Maybe Stella won’t be able to play basketball. Or softball or tennis. Maybe she won’t get the same joy out of the sports that sustained me through middle and high school. (Sorry for the tangent.)

BUT. Sue said that less visually demanding sports like swimming and running (and I’ve heard ice skating is also a favorite of strabismic kids) were very enjoyable to her. In fact, she may’ve had an advantage. In Fixing My Gaze, Sue gives many examples of how the brain compensates for challenges in one area by building up abilities in other areas. That’s basically my lame-ass explanation of neuroplasiticity. In cases of injury or disability, the brain adapts to help us figure out new ways of doing things. In her book, Sue describes a key realization  during a vacation to Hawaii–she was far better at finding the way back to their accommodations at night, though a dark and winding path, than the rest of her family. She couldn’t rely as much on sight, and other senses were filling in the gaps (thanks, neuroplasticity!). Her mind seemed to note how her body moved and felt as it moved down the trail, and she was able to navigate easily and intuitively while her better sighted companions were lost.

Driving a car down the street was a whole different story, however. She was a terribly slow and unsure driver who actually designed her entire life around avoiding the activity. That was her prime motivation for beginning vision therapy–not a belief that she’d be able to see in 3D after 48 years of living in a flat world. After all, she’d been told that after early childhood, this type of correction was simply impossible.

Sue admitted that she often receives desperate emails from people with vision problems. They plead for help in figuring out a way to improve their vision, as past efforts have failed. Wisely, she pointed out that this desperation is a sure indicator that their current doctor is not listening and responding to their concerns. She urges people who feel unsupported and hopeless to find a new doctor right away. An easy way to find one who specializes in vision therapy is to go to COVD.org and enter your zip code in the upper right corner under “Locate a Doctor.” Only a real expert who specializes in binocular vision can help. In other words, you need a developmental optometrist, like the one we were lucky to find for Stella and through whom I found out about this interview with Sue. Hooray!

In the Q & A period at the end of the session, a listener asked if vision could regress following vision therapy. Sue paused a bit, and explained that beginning at age 48, she did vision therapy for one year. This entailed one day a week in the office of Dr. Ruggiero, and 30 minutes a day at home. While her vision has retained its dramatic improvement in the years since, she admits that she still does a small amount of vision therapy at home, just to be proactive. Sue noted that while adults can make amazing advances with help from to high levels of motivation and concentration, children are in a much more advantageous position. A child’s mind is more elastic, and her visual system still developing. For a young person, say, six months or so of vision therapy could very well do the trick, their eyes more quickly trained to work together and new mental habits more easily entrenched, quite possibly for life. With, perhaps, a tune-up here and there (in the form of vision therapy) as an adult.

It was clear to me during this meeting that Sue and her buds at the COVD are trying to get the word OUT! Not only in regards to better, earlier detection of vision problems, better support of children who have them, and awareness of the effectiveness of vision therapy, but also about the widespread belief that there is a critical early window for correction of vision problems associated with strabismus. As Sue put it, conservatively, “the ‘early window’ dogma is overstated.” Their shared hope is to educate eye doctors about vision therapy so that they will then “lay out options for their patients.” A booming AMEN to that.

In closing, I’m so glad I listened in. It helped me realize that I need and want more clarity on exactly what Stella is dealing with. I know she has accommodative esotropia, which is a type of strabismus, and has started down the path (at least) to ambylopia, hence the patching. But do anisometropia and convergence insufficiency also apply? They seem to, especially the former, but I’m not sure because no doctor has ever used those terms in regards to her. Knowing how these terms fit with Stella, or not, would help me interpret and apply what I’m learning. I’ll be bothering her eye doctor even more now. Thanks, Sue! Sorry, doc. (Not really.)

I hope my wordy recap was helpful to someone. That said, you can get all of Sue’s important findings and insights in Fixing My Gaze. As the cover attests, it’s a must-read for anyone interested in vision or our amazing, adaptable brains. Seriously, I have a new appreciation for my eyes and the contents of my cranium. Now if only I could make my keys stop disappearing….

Stella’s weighty two-year check-up.

Posted on by amberhj

So Stella had her two-year check-up today. She received two shots, a delicious wooden tongue depressor, fabulous height and weight percentiles, and a small bit of forgivable misinformation. I’m not sure how I will broach the latter with the doctor, but I plan to do that soon.

To kick things off, he asked about Stella’s vision. I explained the high-level details about her glasses prescription, patching, and the plan to do vision therapy in order to get her eyes to work together. He nodded, remarked that his brother had ambylopia, and said that we’ll probably have to patch (and do vision therapy, I suppose) intensively for “a long time.” He said that the pressure is on and at the same time the road long because it’s an eight-year process. After age 8, he explained, there’s nothing you can do for the weak eye because the brain shuts down the associated neurons. Yet I just read in the extremely well-researched Fixing My Gaze that this is actually not the case for most “strabismics.” The idea of a critical early window for correction of ambylopia and other strabismus-related vision issues has been shot down by Dr. Susan Barry (author of Fixing My Gaze) and other experts. Don’t get me wrong–I’m not flipping out about this contrasting bit of medical advice. I know that treating eye issues early is an excellent idea that improves outcomes. I’m not at all upset with the well-meaning doctor but I want to offer him relevant resources so that he may better  guide and give hope to other patients.

Anyway… here are the numbers:

Stella weighs 27 pounds, which puts her between the 50th and 75th percentiles.

She’s 36 inches tall, which lands her at the 95th percentile.

I know it’s completely batshit insane, but both Cody and I got totally verklempt when we heard these numbers. I know. I know. They don’t even really matter. I know. And I also know you’re thinking, “Why? Why on earth would we still have such a reaction? What is WRONG with you people?”

Sigh. Actually, we’ve discovered a new diagnosis in our family and I will touch on that in a future post. It explains so much. But for now, I’ll expound upon our insanity regarding Stella’s weight. Worry lingered because many openly note how lean Stella is, and those comments can really come across the wrong way and reinforce old fears. Because sometimes she’s too busy to eat and we see that through a filter of our distant tube-feeding past rather than viewing it as the normal toddler behavior it is. Because she just went on a long trip to the east coast, started wearing an eye patch, had two pesky gastrointestinal bugs in the past four weeks, and has been known to throw eating pretty much out the window in the face of disruptions. Because despite our intellectual understanding that she has long been healthy and happily eating to fuel perfectly Stella-appropriate growth, we remained a little too vigilant.

To his immense credit, the doctor must have understood the essence of all this. He paused to celebrate her growth, acknowledged all we’d been through when she was an adorable but feeding-averse baby, and then he smiled at me and said, “It’s over.” Those words hit me like a truck. This is a new era. She’s two. She is three freaking feet tall! And she’s fine. Glasses, eye patch, temper, and all. I feel it in my bones now. Worry doesn’t ever go away when you’re a parent, but right now, for the first time perhaps since Stella was born, I know she is okay. We are okay. It’s all okay.

I get it. For real this time. Pinky swear!

Stella at FarFar's in Duxbury

Stella ate her weight (27 pounds) in deliciously high-butterfat ice cream at FarFar's Danish Ice Cream Shop in Duxbury, MA.

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”).