Stella's eyes

The value of seeing differently

Posted on by amberhj

“Anisometropia” sounds like a mythical city built out of licorice, but it’s actually a vision condition that Stella has dealt with all her life in which the eyes’ refractive powers differ. On Friday, however, we picked up her new eyeglasses in which the prescription is the same in both lenses. This is the first time that her eyes are piecing together a “3D” view of world unimpeded by the obstacle of disparate levels of magnification.

Wearing her new glasses over the past day, she is noticing that small type is fuzzy. She hates it. But just like when she first wore glasses at 18 months old, we were told to allow a two- to five-day adjustment period before worrying that the new script is wrong for her. The hope is that after the brain has a chance to adjust to new visual information, and small muscles change their habits in response to different focusing requirements, the view becomes clearer with less effort required.

During our last optical shop visit, Stella told me as we waited for service, “My vision is sharp as a hawk, mom. I don’t need new glasses!” I launched into an impassioned explanation about anisometropia and her borderline amblyopia how this moment was a big deal–getting glasses with the same magnification for both eyes, finally! I did this because facts sway Stella more than platitudes, and because I needed to kill time while we waited as Stella was a bit agitated. Nothing is simple or easy, but many things are amazing. Someone with her prescription wouldn’t be expected to have great stereoscopic vision, nor see everything so clearly. But she does. It’s just an excess of “near work” that causes issues. It’s just hard to be farsighted, comfortable looking up at the horizon, in a heads-down nearsighted world.

Stereoscopic vision depends on the ability of the brain’s visual cortex to bring together the eyes’ different views of the world, using the similarities and discrepancies to make sense of distance, depth, etc. But what if the two images are so different that they don’t share a point of reference? What if one is more blurry than the other? What if it’s not automatic and takes conscious effort to see in three dimensions?

Great-great-grandfather of the Oculus Quest, the Brewster-type stereoscope circa 1870. Source: Museo Nazionale della Scienza e della tecnologia Leonardo da Vinci, Milan.

Every day last year, Stella came home from school with a headache. So, in every IEP meeting, I would try to remember to mention her vision: severe hyperopia, anisometropia, partially accommodative esotropia. It’s easily overlooked given how smart she is, and it’s overshadowed by the social-emotional challenges that snowballed in the context of an un-inclusive school environment designed to support neurotypical kids. Yet it’s undeniable that due to her vision alone, without regard to any other differences, Stella has had to work harder than just about any- and everyone else. She has contended with double vision at times, as well as pain and fatigue from reading off a screen or paper all day. To say I’m proud of how she perseveres is an understatement.

I noticed that after Stella listened to a book on her Kindle, she remembered every detail. At school, I was told at some point that she often doesn’t really retain key information from reading. Autism or working memory was cited. I suggested that maybe it’s because her eyes aren’t the most reliable way for her to take in information.

It’s so simple, yet so revolutionary, to suggest that people favor not only different ways of gathering information from their world but also prefer different types of information, flat out. And that this is okay. That’s the premise of neurodiversity. It makes sense that for most of humankind’s existence, neurodiversity was a given, so central to our daily life, our survival and our ability to thrive, because we lived in relatively small communities. I’d like to suggest that communities can be thought of as brains, each person with a different role or niche contributing to the functioning of the whole, just like different parts of our physical brains have different roles and niches contributing to our own overall functioning. Sure, there’s some overlap. Some people have similar skills. Some parts of the brain can pull double duty or pick up the slack when another part of the brain falters. But diversity is innate, and vital.

Today, most people are no longer enmeshed in communities, sharing the load of daily existence. By and large, there is no divvying of roles, no playing a day-to-day part in a living community “brain.” That makes life harder for most neurodivergent humans, with our spiky skill profiles. When your brain so heavily favors certain types of information and tasks over others, it’s hard to cover all the bases every day–from maintaining homes, careers, commitments, social connections and family relationships to saving receipts and making returns in time to remembering to sign up and actually signing up your kid for summer camp ten million months in advance or, I don’t know, contending with the Sisyphean task of figuring out what to make for dinner and then actually making it, step by step.

Some autistic and other neurodivergent people may struggle with certain aspects of daily life, while also noting and bringing to light details and connections that others overlook. Again, we’re all simply gathering or emphasizing (slightly or dramatically) different types of information from our surroundings. This is helpful in a community “brain” scenario. If everyone sees the world differently, and connects back to the group, we get a fully dimensional view of the world with more depth, color, detail, and perspective than we could ever get on our own or among those who are likeminded. That’s how civilizations are built. That’s how innovation happens. That’s humanity at our best. This holds true in any place where people come together in pursuit of a common goal or interest–neurodiversity, racial and gender diversity, and disability inclusion are all proven to boost business performance, for example.

Within social movements, most notably civil rights and women’s suffrage, there lies another take on the importance of diverging points of view coming together to bring new ways forward into focus. Having a so-called “militant,” more aggressive force–I think of Alice Paul or Malcolm X–within a greater movement can enable progress by highlighting the hypocrisy of a mainstream that demands nonviolence and yet is underpinned by violence itself, while in comparison making the more peaceful activist groups seem credible or “reasonable” to the reluctant majority, who otherwise would outright reject them.

Due to racism, sexism, and ableism, we value the perspectives and contributions of certain people over “others.” As such our entire society is afflicted with anisometropia. We can’t see all the beauty of the world, all the wonder, all the opportunities–because our field of view is limited. Stereoscopic vision requires that we not only take in what’s right in front of us, but what is all around us. (Our periphery is, ironically, central to our vision.) I think of the misguided souls who took part in January 6th insurrection and how ugly the world must seem to them, how much of the picture and possibility of our country they’re missing.

Miraculously, Stella never dealt with full-on amblyopia, a common outcome of anisometropia wherein the brain just can’t use both eyes together. The inputs are too different to reconcile, and over time one eye is tuned out in favor of reliance on the vision of the stronger eye. She likely avoided it through years of part-time wearing of an eye patch, vision therapy, and reliance on her bifocals. A lot of work. Interestingly, paradoxically, and perhaps relatedly, Stella has off-the-charts visual-spatial intelligence–now there’s a parent brag you probably haven’t heard before.

Little Stella rocking the Quoits Vectogram during a vision therapy session, years ago.

When toddler Stella’s vision issues were discovered, long before her autism diagnosis, I was fearful and unsure about where her visual abilities would land and how her life would be impacted. I sought peace of mind in the fact that of the many unique human vantage points that inform and elevate the collective are those who are amblyopic or otherwise visually impaired. A surprising number of history’s most celebrated painters were amblyopic, likely helping to explain their talent in capturing and translating the feel of a three-dimensional world in a two-dimensional medium. I did not expect Stella to be some sort of artistic genius or “savant,” but knew she could find her place and hone her strengths. Not just in spite of challenges but partly because of them and the unique view of the world they inform. I believe that now more than ever.

I’m eager to see Stella’s headaches subside and her comfort increase as she adjusts to her new glasses. We’ve come a long, long way from her early bespectacled years. I’ll never forget the day, after continually taking off her frames, she yelled, “I’m too big for this!” and snapped them in two. Message received, I never let her outgrow another pair of glasses. Pants and shoes? That’s another story altogether.

I’m excited to see how Stella’s self-driven life will continue to unfold in light of all she’s overcome and with the unique perspective she brings to every moment. Social expectations don’t guide her. Stella’s path is all her own, in a way that more conventional thinkers and neurotypical minds can’t really fathom. While it can be hard to navigate outside many of the guiderails of expectation, this form of freedom can also be a gift. I hope it will eventually feel that way for her.

Zooming out further, I’m stubbornly and cautiously optimistic that everyone’s lives, including hers and all those who are neurodivergent or disabled or otherwise different, can continue to grow richer and expand into their full potential. As we come to appreciate different points of view as not only valuable but essential, we can move beyond merely “seeing” and instead make sense of and discoveries within the world, appreciate deeper meaning, solve big problems, and realize greater purpose.

I now realize that my vision has improved along with Stella’s over the years. Nothing is simple or easy, but many things are amazing. You just have to be open to different ways of seeing.

To Parents in the Storm

Posted on by amberhj

I don’t write about Stella very much anymore. Not because there’s nothing inspiring to share, but for fear of crossing boundaries and exposing a person who is all her own. That said, I know that there are still parents around the world reading this blog because their baby or young child is facing challenges with feeding / eating or vision / sensory / development. I know many of you are terrified, just like I was.

Unfortunately, I can’t impart directly into your brain the sense of faith and relative calm I now feel having been through the storm. But I can tell you that when I see Stella eating salmon rolls and cucumber rolls at a sushi restaurant, I think of you. When Stella reads a chapter book and is totally engrossed and properly using her bifocals (!), I think of you. When she comes home from school happy and recounts an interesting or funny anecdote from her friend, I think of you. There were many days when I simply couldn’t see the way through to these moments. But here we are. You’ll get here too.

Now and again, we go back to our old friend vision therapy; since summer we’ve been doing about 20 minutes a day at home and 45 minutes a week in the office. We still work on persistent toe-walking. She has true academic strengths and she also has to put in more effort in areas that others (parents and kids alike) take for granted. I still seek out ways to support her visual and overall development. But I don’t feel crushed by anxiety anymore. It’s been replaced by gratitude. Partly because Stella is thriving, not to mention extraordinarily creative. And partly because we as a family have emerged from a sort of mental cocoon and emerged more vibrant as a result. Cody and I are full of confidence for Stella and she for herself.

For my part, I learned to stand up for Stella and myself. I learned that being 100% typical is boring–and probably impossible. I learned that there is always hope.

If there is anything I can do to share that hope with you, please let me know. There’s plenty to go around.

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Crossing over

 

 

 

I am not a poet but

Posted on by amberhj

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A short, simple poem came to me today. It emerged out of nowhere, after some rainy gardening. It also happened to appear amid ongoing efforts to stay positive despite a barrage of cold news. Stella still faces some challenges but is doing well. She just started second grade (said her first day was “awesome!”) and achieved 10/10 in 3D vision testing for the very first time recently! Trouble brews in several other of life’s spheres, but I’m feeling strong. And proud to be standing tall. Here it is, paired with the above (miraculously unfiltered) photo taken in the agricultural and floral showcase barn at the Washington state fair.

Autumn Garden

Sunflowers bow their heads
Necks tired
From following
Summer’s sun

Dahlias bloom defiantly
Hanging on
As if to say
“I am sunshine”

 

Something Amazing Happened at Disneyland.

Posted on by amberhj

(Note: This is not a sponsored post. I don’t get near enough traffic to attract Disney’s attention.)

In May, after our first three months of OT and PT with Stella, we splurged on a trip to Disneyland. We’d been worrying and agonizing about new realizations and a new path for Stella. We’d been working hard, with some really tough days, getting into a new rhythm with daily therapy at home. We needed to have some fun. We wanted to get away. We thought Stella deserved an enormous treat. So, shockingly, we did something about it. We up and went to Disneyland.

We stayed at the Disneyland Hotel, with watersides and pools for Stella, and an enchanted tiki bar for us. An excellent choice. I shelled out a little extra for a room on one of the highest floors. I was not paying for fanciness. I was paying for pure elevation. During a wedding-related hotel stay a couple years prior in Minneapolis, we were perched in a room on the 20th floor or so. I was struck by how deeply Stella enjoyed sitting on the wide, welcoming window sill and gazing out at the city. Her eyes scanned and rested, scanned and rested, and she took it all in. She enjoyed telling us about everything going on below. The hustle and bustle could be comfortably observed from above. I wanted to give her that chance again, this time with a view of palm trees and pools and the hotel grounds. She loved the view, even laughing at kids’ funny antics in the pool way down below, and the ability to see and know what could be explored. A very sound investment, if you ask me.

We are probably one of the only families in Disneyland visitor history to actively avoid interactions with Disney characters. We saw people waiting in very long lines for a picture with Minnie. Yet, when she approached our table at Goofy’s Kitchen, dread engulfed our table and we were tempted to pull down the proverbial drapes and pretend we weren’t home. Stella wouldn’t look her way, but gave her a no-look high-five. I chatted with Minnie for a moment, exaggeratively extolling her virtues and pointing out how kind and gentle she was, then she was off to the next table, and we exhaled. I know that Stella loves Minnie, but it was too much to be on the spot and face to face. One day she’ll have the confidence to tell Santa what she wants for Christmas and perhaps interact with, or at least not be afraid of, Disney characters. She’ll do that when she is ready. She loved the parades and waved to all the characters–again, from a distance that felt manageable, from the point of view of a spectator.

There are a million anecdotes I could share, but what stands out most about the trip is one ride, and Stella’s dramatic response to it.

I didn’t expect Stella to like this ride, which involves wearing 3D glasses, spinning through space in a way that feels unpredictable, and shooting at constantly moving targets. Because it’s a total sensory bombardment, and because we (foolishly) attempted a 3D movie not long before, and she lasted 15 minutes before we just had to leave with a very distraught Stella. But she absolutely loved Midway Mania. And for her, it was vision therapy.

Why did this ride work for her? She was engaged and motivated. She loves Toy Story, she loved the “game” aspect of it, she loved seeing beloved characters who seemed to be responding to her and cheering her on, she loved feeling like she could do it herself and, I suppose, be instantly rewarded by congratulations from her favorite characters and video-game-esque sounds and scores.

After the initial shock wore off and we realized that, seemingly against all odds, she really loved this ride, we went on Midway Mania at least eight times. Which to us was a whole lot. I often had to carry her in line, but it didn’t matter. When she expressed interest in going on that ride, we made it happen. We were shocked that she could do it and wanted to do it. Not only that, but her scores improved with each successive ride. The mere fact that she could tolerate the glasses, see in 3D, and play this fast-moving interactive game at all was beyond highly encouraging, but we didn’t really let ourselves wonder what it meant for her vision. We were thrilled that she was having so much fun with it. We followed her lead.

Then, for one fabulous week after this vacation and its highly entertaining form of vision therapy, I saw (temporarily–again, just for one week) astounding residual effects. Not bad for a grand total of 50 minutes (maximum) spent on a ride. For example, Stella had previously avoided talking to our neighbors, almost completely. And we’ve lived here in this house and neighborhood for a year and a half. A day or two after our return from Disneyland, while standing in our backyard, she talked to our neighbor for about 45 minutes. On her own. Cody and I were inside, watching from the kitchen, incredulous, watching the clock and marveling at what was unfolding. Later, the neighbor told me that Stella filled her in about every aspect of Disneyland, what flowers we were growing in our yard, and more. The neighbor postponed dinner and hung in there with her for so long–they knew how big this conversation was. We all did. At school that week, Stella’s teacher remarked on how well-rested Stella seemed, how she was not getting frustrated like she used to. Her occupational therapist noticed (without our prompting or telling her about the ride or any changes we’d noticed) that Stella seemed more regulated, and more aware of and interested in people, noises, and activities around us. It’s not that Stella doesn’t notice anything usually. She does! She hears everything, for starters. But she just doesn’t always slow down, remark on, and engage us about them. She just seemed more in tune with a bigger share of the world around her.

As Stella’s developmental optometrist explained it amid a much longer and more helpful description, so much of Stella’s mental energy goes into a conscious effort to simply keep her eyes straight. Interpreting and reacting quickly and gracefully to the world around you–especially the unexpected–can be extraordinarily difficult when it takes a large share of your inner resources to simply “see!” We believe that for that brief window after Disneyland, this was no longer the case. When her eyes were better coordinated without requiring strenuous effort, her world opened up because she could relax and take it in. It was a truly beautiful sight, and I’d seen flickers of it before, when Stella did vision therapy two years ago.

And so, two weeks ago, Stella began vision therapy again. For months leading up to now, we’ve been focused on building the foundation upon which vision rests, and that includes basic motor skills, sensory integration, and postural and primitive and reflexes. That work is ongoing alongside vision therapy. Yes, another crazy ride. We’re working hard to give Stella a better view of the world, but it’s more than that. We’re working to empower her to comfortably and confidently engage with the world, and without the urgent need to keep so much of it at a safe distance.

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On my parenting journey, and “Far from the Tree.”

Posted on by amberhj

My child is strong and healthy. That said, at just four years of age, she has already taken part in occupational therapy (OT), vision therapy (VT), cranial sacral therapy, and yoga therapy (also called Integrated Movement Therapy or IMT). Her vision conditions, and early feeding aversion, have presented us with atypical challenges. Yet there is nothing “wrong” with Stella. No affliction that will define who she is. Deeply grateful for her essential wellbeing, I am always striving to provide the support she needs. An odd and awkward balancing act, at times.

I’ll admit that during her tube-fed days, while entertaining the worst possible outcome, I told myself that if she had to live her life with a feeding tube, the intervention could inform positive trajectories. I dared imagine her future as a groundbreaking artist exploring the increasingly common intersection of biology and technology. Or perhaps she could come to value food more than any average, orally eating person, and find renown as a chef who never enjoys more than a fleeting taste on the tongue but whose culinary innovations leave the ordinary far behind. These ideas seem foolishly focused on fame and success, but in my darkest postpartum, tube-feeding moments, they allowed me to envision a happy future for her wherein her difference was not just a detriment. I took comfort in knowing that the most inspiring people often have the most trying backgrounds. After a successful tube wean at just a few months old, she became an eater in short order. She is now four, and her sizable appetite won kudos this Thanksgiving from Cody’s 94-year-old grandmother. I can’t lie: I wear that compliment like a gleaming badge of honor. If Stella had needed her tube indefinitely, though, I like to think that we would’ve embraced it yet not let it dominate her identity.

I have worried about her far too much, and still do. More VT and OT are on the near horizon. Strabismus and amblyopia can affect motor skills, so the VT and OT are linked. When Stella’s eyes aren’t working together well, our world becomes less stable along with her binocular vision, and tantrums skyrocket. I question myself, my personality, my attitude, my words, my own diagnosed deficits, and then I question doctors, and PubMed.gov, and Google, to the point of black-hole depression. Instinctively, I blame myself for Stella’s every struggle. I prepare myself for the worst while researching, hoping, and double-checking in pursuit of the best.

My experience with motherhood is a soft, tropical breeze compared to the realities faced by the parents featured in Andrew Solomon‘s incredible and essential book, Far From the Tree: Parents, Children, and the Search for Identity. But then, toward the end of this gripping tome about parents of exceptional or “different” children,  he notes that a couple in London chose to screen embryos, essentially genetically engineering their child, so as to avoid the father’s severe squint. (For those with stereoscopically typical selves and kids, “squint” refers to strabismus or misaligned eyes.) This particular anecdote helped bring the entire book home for me, and felt like a sucker punch to the gut. I imagined their alternate-reality, unscreened child, much like Stella or perhaps the inspiring Stereo Sue, who would have been born cross-eyed. Surgery, glasses, and vision therapy could have corrected it, with much joy and love to be had in the meantime. Yet, strabismus was deemed too much of a burden. What an ugly and spiritually impoverished world, I thought, in which technology eliminates differences. What a waste of potential and perspective. What a horrible message to send: “We only want a ‘perfect’ child.” As if that exists! Then I think of the four eye doctor appointments we recently attended in less than two weeks, and I’d be lying if I said I didn’t wish to spare her from stingy eye drops, and double vision, and headaches, and frustration, and eye patches, and exhausting daily vision exercises. But you can’t take the squint from Stella. It’s part of who she is. To cut that out of the picture would be to paint a completely different child, the thought of which is dark, insane, and brutalizing in the light of our love for her.

Stella’s vision and the severe pain from my milk, and subsequent trauma from repeated insertion of an NG tube by ER professionals and yours truly, have likely affected her personality or personhood. We’ll never know to what degree. To assume that the impact is solely negative is a biased, ignorant, and even dangerous assumption. Among many other strengths too numerous to name here, I see a child who is an incredibly strong and increasingly eloquent self-advocate and self-starter, and who is very in tune with how she feels and what she needs. (She is the opposite of a doormat–not angry, but aware and, well, adamant!) It’s possible that these building blocks could lead her to become a defender of others’ rights and wellbeing as well.

As I marvel at Stella’s abilities and resiliency and simply enjoy mothering and being with her, I am anxious about possible gaps in development and the winding road stretched out before us. As children grow, visual demands increase. More “near work” and expectations of longer attention spans. Learning to read and write. Using scissors. Making friends and maintaining eye contact and higher level relationships with them. With bifocals and a year of vision therapy (undertaken at age two) under her belt, Stella’s visual abilities have served her well until recently. Her visual system apparently has begun to reach its coping capacity and needs help in order to support her continued development. She will benefit from an increased eyeglasses prescription, and an OT evaluation to help create a more targeted approach to vision therapy. In the meantime, I pray surgery won’t be needed and wrestle with uncertainty about whether she should go to Kindergarten next year, as vision issues flare, and her birth date just a week before the cut-off for Kindergarten acceptance.

For the sake of sanity and enjoyment, I longed to read something other than strabismus-oriented studies, optometrist’s blogs, and medical journals. But I wanted meaning and relevancy, not fluff. Far from the Tree was the answer, and led to some sleepy days for me. I read all 700+ pages almost compulsively. Filled with the stories of parents of children with Down’s Syndrome, autism, dwarfism, criminal behavior, and more, the book is sometimes harrowing but always heartening. I found it a welcome relief from typical parenting fare, which tends only to feed modern parental neuroses and our fear-driven obsession with perfection. Most of the parents featured in this book love their children with a depth they may not have achieved outside of their unexpected journey. The line between difference and disability is often blurry, and in that gray area lie gifts for those open to seeing and receiving them. The vibrancy of deaf culture and the contributions of Temple Grandin are good examples, among many, many others poignantly detailed by Solomon.

I feel differently about my role and experiences as a parent, thanks to Far from the Tree. I was affirmed by the book, and I think just about any parent would be. Current turmoil and all, I am more determined to do whatever I can for Stella’s vision, yet less destructively worried. And this mindset may fuel better decision-making. Check out this passage from page 22, which brought me to tears:

“The attribution of responsibility to parents is often a function of ignorance, but it also reflects our anxious belief that we control our own destinies. Unfortunately, it does not save anyone’s children; it only destroys some people’s parents, who either crumble under the strain of undue censure or rush to blame themselves before anyone else has the time to accuse them.”

To Andrew Solomon, with whom, by the way, I share the dread-filled experience of waiting for the results of a baby’s head CT scan, thank you for writing this book. In regards to my daughter, I’ll inevitably worry, and wonder how much intervention is enough or too much, and blame myself at times. But as a parent, I move toward the challenges ahead with more grace, having read Far from the Tree.

Blogging, Stella's eyes, vision therapy

Look what the cat granddaughter dragged in!

Aside | Posted on by amberhj

Hello, blog. How are you? What? Those bags under my eyes? No, ten years haven’t passed. I’m just really tired. Mom tired. Recently-nighttime-potty-trained tired. You get the picture. Not a picture of me until my next haircut, though. I need bangs to distract from the bags.

So, Stella wears bifocals now. I think they are making a real difference. She had a growth spurt and the stress of that seemed to  bring out some crossing at near, even with glasses. The bifocals keep her eyes straight, and as a result I see renewed interest in painting, drawing, and writing. When it comes to art projects at school, Stella is a severe minimalist–we’ll see if that changes.

She also took the Wachs Analysis of Cognitive Structures Test (WACS). The point was to find out how Stella’s vision affects her development–and it showed delays in visual motor and visual information processing. I’m not even going to get into the particulars right now. There are a lot of them and I’m still mulling it over. I’ll just note that Stella’s pretty darn amazing. What did Darwin say? Something about how it’s the ability to adapt that determines who survives and thrives. Stella’s brain figures out ways to do things that should be almost impossible. Which is kind of why I’m throwing my hands up at this point.

Yes, Stella gets frustrated sometimes. Very, very frustrated. (It’s partly why I had the testing done.) But so do I. Someday after ripping off her shirt buttons in frustration, she’s going to look at me and say, “You, all right? I learned it by watching you!” The test results claim that everyday tasks are harder for Stella and that her frustration is partly due to intelligence–she is aware that things are harder than they should be and she wonders why she can’t do things more easily. So I take that into consideration. I’ve been presented with an option for working on this. The thing is, she can do so darn much. And she’s only four, and newly so. She’s already done a year of vision therapy and patching.

Stella joyfully participates in yoga, creative dance, and gymnastics. She swims regularly–without floaties now, too. She enjoys going to preschool three times a week. She loves puzzles, workbooks, books, playgrounds, watercolors, and pretend play involving silly bumblebees that bump into walls and make popcorn, and two dogs who have a cat for a granddaughter. If you trip, Stella will ask if you are okay. She remembers book after book. She is sweet in quoting them, like when she says to me, “I’ll eat you up I love you so!” and then pretends to chomp on my arm. Every night before she goes to bed, we all sing the alphabet backwards, then I tell her, “I love you always, and I love you lots.” She sometimes says, “I love you always, and I love you SEEEEEEBS.” Just to be silly, to make us laugh.

While day-to-day things can feel harder for us at times, I’ve always secretly chalked it up to the fact that she is sensitive like me. For example, you know all those instances when a little kid innocently answers a question, and everyone in the room laughs heartily because the child’s reply, tone, or all-around cuteness is just so cute? Stella f’ing hates that. Actually, she seems truly wounded by it. Sometimes her response is anger, but more often in such moments I see her face fall dramatically, her breathing deepen, and tears well up slowly and steadily–the kind of tears that are raw and unmasked by anger, pushed up from way down inside because it’s a real hurt. I figure she’s smart and she doesn’t like being laughed at when she’s not trying to be funny. I mean, do adults like that? Not so much.

Social situations can be tricky for us, sure. When Stella doesn’t want to talk to you, she really doesn’t want to talk to you. But is that the sign of a problem? The fact that she doesn’t do things just to please other people? Just because an adult is asking something of her? It can be awkward when Stella doesn’t respond to people in the way they want or expect. She buried her head in my shirt to avoid looking at or talking to her pediatrician at her 4-year check-up (he’s a man–I think it’s time to find a woman to replace him). But I see Stella’s social side, too. She has friends. She loves her classmates, teachers, and family. She comes around, when she’s ready. I do think her vision affects her. I also think she’s simply her own person.

We continue to monitor her vision and look for ways to support her. But mostly we admire and enjoy Stella, just for being Stella.

Judgement Day for Stella’s Vision, Part 1: Ophthalmology’s View

Posted on by amberhj

Well, on Friday morning, Stella and I made our way to Seattle Children’s ophthalmology department for her yearly exam. The high-level stats for those keeping score and not wanting to sift through a lengthy post: Clear improvement of stereoscopy, virtually unchanged acuity (still one line different at 20/30 and 20/40, though one examiner saw equal acuity), half a diopter increase in the prescription in both eyes (still 1 diopter greater prescription for the left eye), still no crossing with her glasses, and if I want to, we can stop patching for at least a few months and see how she does. The improvement in 3D seems huge–her eyes are working together!

Here we are, at another crossroads, 14 months from Stella’s initial ophthalmology appointment wherein glasses were prescribed and followed quickly by patching, and nine-ish months from the start of vision therapy. (A typical course of vision therapy is nine to twelve months.) This was slated to be our last month of vision therapy (with regular six-months check-ins, and therapy brush-ups as necessary as Stella grows), but I’m interested in perhaps continuing for a couple months to solidify her gains and help that left eye catch up further. This will be decided in a couple weeks, during part two of Stella’s assessment, in the office of Dr. T, our developmental optometrist/vision therapy practitioner extraordinaire. I’m also eager to hear her take on the ophthalmologist’s findings and prescription.

I’d like to pause and explain why I take Stella to see both an ophthalmologist and a developmental optometrist. I’m a big proponent of vision therapy but I’d be a hypocrite if I dismissed ophthalmology, wouldn’t I? Ophthalmology may have its blind spots but I love getting another, more traditional point of view to consider so I have all the bases covered. It really, really bothers me when people write off vision therapy and developmental optometry based on ignorance and bias. When I bring it up in discussions with other parents on Little Four Eyes (mainly the Facebook discussion board), it usually gets ignored, though there are a few supportive voices. I’m learning to keep my thoughts here, in my own posts on the Little Four Eyes blog, or in welcoming vision-therapy-focused forums, so as not to seem intrusive with my rabid pro-vision therapy agenda. The horror! How controversial of me! (Insert eye roll here.) I don’t take it personally, and simply want to share what’s working for us with anyone who is unsatisfied with the status quo. Because if you look closely at the status quo, it kind of blows. Patching alone is proven less effective, typically with far less enduring results. It addresses the weak eye, but not binocularity, not the brain-eye connections involved with fusion. Amblyopia is a brain issue, not a simple eye problem. So I have created a more powerful, comprehensive plan for Stella than the traditional, ophthalmology-only path would provide. It’s not “either-or.” I’m not narrow-minded about it. Vision therapy has changed Stella’s life in multifaceted ways. Hence my enthusiasm.

Relatedly, I’m no longer so nauseatingly nervous about evaluations of Stella’s vision. It’s simple: I am confident that we have done our best. We’ve done everything possible. I know that Stella has benefited tremendously in measurable “data collection” sort of ways, and in less number-friendly ways that are clearly observable to the people who know and love her. Once again, I am reminded of her tube-feeding and weaning days. The medical system is letting down many tube-fed children, by not helping them wean when physically ready. Quality of life plummets as tube feeding continues. And why does it continue? Because dietitians and doctors are focused on numbers, rather than the child. They are concerned with milliliters of intake, weight and height percentiles, and not the child’s (or family’s) experience or enjoyment of life. They ignore the absence of the powerful but unmeasurable sensation of hunger, and hyper-focus on the measurable absence or perceived inadequacy of oral eating. What I love about vision therapy is its intrinsic holistic nature. How Dr. T held Stella’s hand and escorted her in, and noticed Stella’s toe-walking upon meeting her. How Bethanie notes even slight changes in Stella’s behavior or demeanor during exercises. How Stella’s vision is not evaluated in a vacuum, detached from her personhood and day-to-day reality. I feel that many areas of medicine, not just ophthalmology, could learn a great deal from this model of care.

Back to Children’s. About thirty-nine people were involved in the eye exam process, so I’m not sure I’ll recall exactly how it went down, but I’ll do my best. I’m going to go ahead and break it down because while mind-meltingly boring to many, it could be helpful to other parents and maybe a practitioner or two. I hope so.

Stella underwent a series of exams, then eye drops to dilate her eyes, then another series of exams. And woven in with the charts and cards and gazing at robotic puppies through many lenses was a series of contradictory statements and findings that I found confusing. At the same time, I did note an effort by the Children’s ophthalmology team to be respectful and thorough. All of that considered, I’m not sure we’ll be going back. I may consult with another ophthalmologist, to at least see how the experience and approach differs.

The initial examiner/assistant declared equal vision in Stella’s eyes. Yay! At 20/40. Boo? This supposedly age-appropriate acuity represented a decrease in her right eye, as it had been 20/30 in her previous ophthalmology exam. This person conducted both the first run at the standard eye chart testing, wherein Stella calls out the pictures/symbols she sees, and teller cards screening. During the latter, Stella saw the lines on all the cards presented, with both eyes! That has to mean something great, doesn’t it? Stella even pointed at the lines, instead of just looking at them. Seemed like she nailed it, but what do I know? Very little, it seems.

In the very exciting component of stereoscopy testing, as it reflects binocular vision or lack thereof, Stella showed real improvement! She not only tried to grasp the fly’s wings, as always, but she saw all three 3D characters on lines A, B, and C. Previously, she’d only indicated seeing the character pop out on line A! I felt like this was a big deal, but the moment felt anti-climactic for some reason. Maybe because there was no reaction from the woman doing the exam so there was no feedback in that moment about the improvement. I wanted a parade! At least some balloons and champagne. Step it up, Children’s!

Then the friendly orthoptist, like a breath of familiar fresh air, breezed in and gushed over Stella’s super adorableness. As I recall her doing at past appointments, she checked and re-checked Stella’s acuity–with particular interest this time, after seeing that it had supposedly changed. She decisively measured acuity of 20/30 for the right and 20/40 for the left, as in all prior ophthalmology appointments. Stella just couldn’t quite get the symbol presented for 20/30 with her left eye, but I really thought she whispered it once out of the three or so attempts. This woman was in tune with Stella’s history and status. She cheered the fact that Stella’s glasses still keep her eyes perfectly aligned at near and far. Because that is big and not to be overlooked! She put a negative lens in front of Stella’s glasses lenses, and discovered that while Stella did pretty well, her alignment did suffer a bit with the lower prescription. So I knew then that Stella’s prescription would probably not be decreasing. A bit disappointing, but not a big deal. In any case, it was reassuring to have someone be extra thoughtful and careful. As always, this orthoptist was delightful, and seemed genuinely invested and interested.

While I can’t guarantee the accuracy of my recollection of the order of events, I believe the eye drops were next. At bedtime the night before, and in the morning prior to our departure, I informed Stella about what was going to happen at the eye doctor–including the tingly eye drops. I explained roughly how and why events would unfold. Maybe that helped, because while she squirmed a bit, there was no yelling, no panic, no crying. Amazing. In short, Stella rocked the entire situation like a rock star who ROCKS. It impressed me, and everyone else, that she handled everything so calmly. Then she cruised through a 30-minute wait while half-watching Dora, impersonating a monkey while climbing chairs, and cracker snacking while making me nervous about insidious hospital germs being transferred into her mouth along with each bite.

Then the moment of truth, I thought. Nope! Another guy came in and looked in Stella’s eyes with that little handheld light, various lenses, and the contraption that looks like an old timey miner helmet combined with a futuristic mind reading device. At one point, he said, “Perfect!” What was perfect? Her posture? Her left cornea? This is how I think, people. Yet I held it in. I didn’t question him, mainly because Stella was shy and uneasy around the dude. So I was focused on her.

Okay, finally! The ophthalmologist came in, on a throne carried by an elephant, and warmly greeted us. She was accompanied by another dude. A student? A new resident? Not sure, but this was clearly a teaching situation. Stella eyed him with suspicion. The doctor casually and quickly delivered what could be considered an “intro,” saying that Stella looks to be doing quite well but needs a prescription change. Cool. I didn’t think too much of it as she proceeded to review the notes a bit and take her own measurements of Stella’s eyeballs. Not long into this consultation, another of the several small but confidence-undermining errors of the morning unfolded. She noted that Stella’s acuity was now equal at 20/40 in both eyes. I was all, “It is? Actually, I’ve heard both–that they’re equal and that they’re not.” So she looked closer at her folder and realized the mistake. This is the problem, I think, with Children’s “team medicine.” On one hand it may be reassuring to have many minds and specialists working on the issue of Stella’s vision, but as with her hospital stay at Children’s for GI and feeding issues, it seems to create confusion as information does not consistently track smoothly from one person to the next, to the next, to the next. Which makes me feel hyper-vigilant, as it’s up to me to prevent disaster. Fun!

This next bit almost seems impossible, so I’m thinking I must have actually misheard her. But here’s what I recall. On the topic of Stella’s unequal but close acuity, she said that everyone has a dominant eye, that many doctors don’t consider it actual amblyopia until there’s a two-line difference, and that Stella’s eyes seem to be working together well, but we may want to consider patching. Huh? We’ve been patching for at least nine months. I cut her off as she continued to say, “We are patching,  two hours a day.” She said something like, “Well, two to three hours of patching a day certainly won’t hurt…” I hope not, because you prescribed it, lady. I really am wondering if my hyper-vigilant self simply cut her off too soon and created this whole mess–so put a big mental asterisk there. She then said that it was up to me, but that we could take a break from patching and see where Stella’s acuity lands in four months, at her next appointment.

This when the doctor acknowledged my point of view as a parent. Nice! She said she knew that patching can be tough and that if it was agonizing, a break might be a really good thing for both of us. With a laugh, she said sometimes parents need patching breaks more than their kids, and besides, she was confident Stella would be just fine even if–worst case–her acuity went down slightly in that time, because Stella is still young and has more time for effective patching. I think I forced a laugh, but I really did like her nod to parental sanity. She also pointed out that if I thought it would be hard to get Stella patching again after the break, I could just continue our two-hour-a-day regimen and we’ll reassess next time. On the surface, these statements seemed 100% delightful. But then they sunk in and I saw their underbelly: a mentality that embraces years and years of unpleasant patching as the sole treatment for amblyopia.

When it comes to the actual examining and measuring, I get the sense that this doctor is very skilled. Efficient, calm, and precise. She asked Stella if she’d be willing to sit out in the waiting room and teach other kids how to cooperate during an exam. I was already very proud of Stella and this comment made me smile. Stella for the win!

At the very end of this saga of an appointment, I didn’t quite follow the reasoning about the prescription. I hadn’t eaten anything. My blood sugar was low while vigilance remained high. Maybe I shouldn’t feel such an impulse to completely understand all the makings of the figures in that glasses prescription grid. Maybe I shouldn’t be noting every comment everyone makes as they do the exams and comparing and slicing and dicing them. Like when the student guy took a turn looking in Stella’s eyes and the doctor told him he’d notice a “duller” something or other, and that was just a downer to hear. Maybe I should just trust that this is the right prescription and no mistakes have been made, no key bits of information overlooked. But dude! It’s not exactly smooth sailing over there! And when it came to the prescription I had a pretty sizable though fleeting misunderstanding.

After measuring, she said she was going to decrease the prescription to allow Stella’s eyes to do some of their own accommodation, which might help us reduce the prescription as she gets older. Surprised, I was all, “Wow, that’s GREAT!” Then she handed me the new prescription, and I stuttered, sadly, “B-but, this looks higher than her c-current prescription.” And I saw in her eyes recognition of my misinterpretation. She paused to look in Stella’s file to find her previous prescription and said, “Ah, yes, this does represent an increase in her prescription from last April.” Then she explained that she was reducing the prescription as measured TODAY. It makes total sense. But when you present a new prescription to a patient, or her mom, shouldn’t you talk about any change and reassure about or explain that change at least somewhat? My confidence wasn’t exactly 1,000% by then based on the other slip-ups, so I started thinking about the doctor’s and orthoptist’s statements that Stella’s eyes are perfectly aligned in her glasses. If they’re aligned, why does she need new glasses? Isn’t that the point of the glasses? Honestly, by then I’d contradicted, questioned, and corrected the doctor a few times already and didn’t want to keep pushing. It was just getting awkward so I let my anxiety start to take over a bit, and I backed off. But now I wish I’d just said it. I wish I’d expressed that lingering doubt, and resolved the issue for my own benefit. For some reason I protected the doctor from further scrutiny. Why I feel the need to shield surgeons from any cutting remarks is a mystery! (Sorry.) Mainly I protected myself from further cringing–I still judge myself to be overly worried at times, and overbearing. I don’t want to create an antagonistic mood wherein people are more likely to make mistakes or be unreceptive to my questions. But I’m Stella’s advocate! It’s up to me to ask all the questions. It’s my job to make sure she gets the best care. This shouldn’t feel like a heavy, overly complicated task, should it?

We had a vision therapy appointment at 5pm that same day. Yep. Our therapist and I thought her eyes would be back to normal by then. Nope! They were still quite dilated, and I had to wake her up from her nap in order to get there on time. Which, duh, is a recipe for sour Tantrum Soup! I expected a tough session and said so to Bethanie, Stella’s vision therapist. I was so wrong. Stella stepped up and knocked it out of the park. We enjoyed tasty Giddy Cooperation Quiche, or something. Bethanie got another heaping helping of Stella’s growing adaptability, sociability and even her hilarious fake evil laughter during the “red light game” in which Stella and Bethanie had great fun together. A delight to behold. We were on top of the world, I tell you! We were invincible! Remember when a regular session of vision therapy resulted in angry desk-clearing? When the yoked prism goggles created an instant bad mood? No more. She wore them agreeably, base-up and base-down, on a balance beam, popping bubbles, reading the letters corresponding with a little moving light, calling out the color of the arrows on a chart while bouncing on a trampoline, and on and on. She did some impromptu victory laps. She said, “I did it!” several times, with glee. How far we’ve come.

In a perfect world, the ophthalmologist’s exam would’ve shown 20/20 (or 20/30) acuity in both of Stella’s eyes. But it’s not quite so simple. The greater context includes minimized toe-walking, dramatically improved peripheral vision, and clearly enhanced stereoscopy. To me, the results of our sojourn with ophthalmology were affirming, like all of the improvements I’ve seen in Stella’s vision throughout the last nine months.

To conclude, a few things I’m looking forward to: Dr. T’s upcoming optometry evaluation and input. Much needed new glasses for Stella as purple tie-dye duct tape is now holding her specs together. A patch-free summer with my vision therapy champion of the world (toddler weight division).

The Great Peripheral Awakening of 2011

Posted on by amberhj

A few weeks ago,  I noticed a distinct change in Stella’s vision. Bam! It could not have been more obvious if she slapped me across the face and said, “Damn it, mommy woman! My vision is changing! Give me a god damned hug!”

In short, her peripheral vision opened up in dramatic fashion. Last year, when the esotropia hit the amblyopia fan, I would not have even known that Stella’s peripheral vision was limited if not for the input of our developmental optometrist and vision therapist. Our ophthalmologist never made mention of peripheral vision, which is a sizable piece of the pie in terms of how we take in our surroundings. It affects how we feel, not just how we see. Anyway, I suddenly had clear evidence that Stella’s peripheral vision had been turned on or amped up by the yoked prism goggles, or at the very least she became more aware of it and more tuned in to her surroundings.

How did I know? Walks became more stressful for a while. We live in a bustling urban neighborhood. In fact, it’s been declared the dessert capital of Seattle, with quaint cupcake, gelato, ice cream, chocolate, and pie shops all within a couple blocks. Strolls can be highly caloric, though I like to think we break even, what with the ambulatory mode of transport. For a while during this period of visual transition, when we walked along the sidewalk and approached a crosswalk leading to some sort of sweet destination or none in particular, Stella would get very upset. She experienced panic at intersections. At first I didn’t quite get it or its significance, and in my ignorance probably thought, “Yeah, I wish the cupcake place was closer, too! Mommy needs chocolate NOW!” Honestly, her agitation was too high to downplay and her actual reasons became clear quickly. Her anxiety was sparked by cars approaching from the cross street. She reacted as if the cars (moving in our direction on the cross street, so at a perpendicular trajectory, and I should really have my engineer husband proofread this) were coming straight for us. She lacked the common, seemingly natural understanding that vehicles would stop for us if we just waited at the curb. She was downright afraid they would hit us–even if they were a good half a block away. Stella refused to walk all the way up to the curb to wait to cross, she wanted to stay back from the road, so that’s what we did for a while. Until the fear faded away and she found a new “normal.”

Stella simply wasn’t used to being able to see the cars’ motion in her periphery. The difference was clear as day and her reaction was made my heart race. I knew that a sizable shift was taking place. My gut had no doubt that this was a positive development, and that she was simply noticing the previously unnoticeable, but I also felt her visceral fear and desperately sought to soothe and reassure her. The intersections that never bothered Stella before, with the usual rhythm of cars coming and going, were now somehow very different to her. This was around the time that I noticed, during a vision therapy session with the yoked prism goggles, that she was locating letters on the floor without looking directly at them.

As she has time and time again throughout her 2.75 years, Stella adjusted. She learned that this is the way streets and intersections and crossings work. That cars approach but are not actually barreling for us. It wasn’t long before she incorporated this new broader, more inclusive view as normal. Stella now seems less afraid of most things, in fact. She’s been more and more social and talkative, and increasingly adaptable in general. Her babysitter recently marveled at the fact that most of Stella’s talking to her had been echoing, simply repeating what she’d said, but now Stella initiates and offers her own thoughts. The echoing is drastically reduced if not gone for the most part. We recently had company and Stella brought item after item to Cody’s best friend Tom, engaging him excitedly and chatting away. This is new behavior. Part of it may be simple advancements that come with age, but I think just as much is related to her vision. I have other observations to back this up, like her weeks-long fear of playground structures and other kids on said structures. That’s gone, too, and its disappearance coincided with what I’m calling, as you can no doubt guess having read my witty subject line, “The Great Peripheral Awakening of 2011.” If only the United States’ financial industry could follow suit.

Life is less stressful and more secure when you are aware of your surroundings, I imagine. To me, nothing feels better than seeing her happy. To witness her blooming into this more engaging, engaged, often fearless kid.

Like many people with esotropia, her vision has been focused centrally–like tunnel vision to some degree. We’ve done vision therapy for almost nine months now, and have devoted many recent weeks to use of the yoked prism goggles (20 minutes a day at home, with 10 of those base up and 10 base down) to open up her field of vision. Vision therapy, including our goggle time, will likely end in a few weeks. This Friday, Stella will have an exam with our opthalmologist, and a couple weeks later we’ll head in to Alderwood Vision Therapy see our developmental optometrist, Dr. T, for a progress evaluation. This is a crossroads. I’m still nervous about her amblyopia, and about whether her prescription will increase. But I’ve seen real progress that can’t be denied, including the minimizing of her toe-walking. I’ve been amazed on a weekly basis by the thoughtful, individualized approach and powerful yet nuanced, seemingly subtle but life-changing, results of vision therapy.

It’s been one hell of an eye-opening journey! (You didn’t think I’d given up terrible vision-related puns, did you?) When I look back, I’ve been most struck by my sharp yet sweet two-year-old Stella and her ability to adapt to a new way of seeing the world, a place that to her now feels wider and more welcoming.

Artist, and goggles, at work

Posted on by amberhj

Artist at work, wearing yoked prism goggles

Vision therapy? Art therapy? Either way, we're winning.

Stella’s Easter basket included a sweet set of watercolors and accompanying pad of paper. She’s used them every day so far, at her request, and as it so engages her, I’ve been putting the goggles on her while she paints. We’re starting to branch out, no longer limited to the brush that was included with the set. Fingers, Q-tips, and other brushes and random household items are coming into creative play. Relatedly, today’s “watercolor goggle time” turned into “manic sprinting while tossing cotton balls all over the place goggle time.”

Currently, Stella’s only at-home vision therapy exercise is to wear the yoked prism goggles, base-down, for a minimum of 20-30 minutes per day. It’s going very well! The first couple days wearing them at home, she took them off after five minutes and I didn’t push her to do more. I figured she’d adjust, and she did. Voila! Less than a week later, 20 to 30 minutes (or even a bit more) are flying by and I don’t have to work so hard to keep her busy and entertained during goggle time. Plus, I could fill a gallery with her prism-goggle-influenced masterpieces! Naturally, I’m accepting bids starting at $500. GO!

Nest

When asked about her inspiration, Stella said, "I made a nest for birdies!" Sure, it's a nest, but the underlying narrative taps into Americans' current longing for security and "re-connection" with nature. Brilliant work.

Untitled. Stella's first foray into watercolors, on Easter Sunday. On the surface, it's a tribute to the joys of spring and candy, but underneath, there's a deeply conflicted expression of the promise and peril of modern childhood. Stunning.

Quick VT note: TLC for Stella’s transitioning toes.

Posted on by amberhj

Stella’s toes are starting to relax. The yoked prism goggles continue to benefit her, but it’s created a small, surprising side effect. Turns out, her toes have been clenched so consistently for so long that the skin is actually having to stretch out as her toes extend outward. There are now raw, sometimes bloody cracks on the bottom of her toes in the incredibly deep creases that formed where her toes folded and curled over. Her right foot is more affected and cracked. I’ve actually noticed that when walking, her right foot is more consistently flat than her left, which has just a slight bit more reliance on her toes still, though both feet have clearly improved. Stella’s brain is figuring it all out, and it’s fascinating to watch. Well, almost as fascinating as watching her attempt to unwrap and quickly devour a foil-wrapped chocolate chick this morning. Only Kevin Garnett of my beloved Celtics can match that level of intensity.

I’m making sure antibiotic ointment is liberally applied and socks are worn when she is up and about. With those two pieces in place, she’s fine. Otherwise, it’s painful and she limps over to tell me her feet hurt. I apply a thick layer of “booboo cream,” usually tickling her in the process. Then all is well.

Those little piggies have been tasked with gripping the ground tightly in an effort to keep Stella up high. As previously explained, she was positioning her body in a way that made sense for her visual field. The goggles are helping re-wire her brain and create a more accurate map of her environment and her relation to it, spatially. Ten tiny toes have carried much of her weight for most of her walking life! Through vision therapy, her toe-walking is dissipating. When she runs I hear her feet slap the sidewalk. It makes me smile. I’m thinking about making it my ringtone.

And hooray! We currently have a pair of the goggles checked out for use at home, and she’s doing very well as she ramps up to wearing them in the base-down position for 20-30 minutes a day, minimum. She doesn’t mind them so much but still prefers close-up activities for now. Like unwrapping rare bits of candy or making play-dough Easter cookies.

For now, I await the healing of those little wounds as Stella’s toes delegate responsibilities to the rest of her foot. I’m constantly noting positive changes in Stella, including a heightened awareness of her periphery, which I’ll talk about here soon. But most of all, I relish the small but big changes that unfold as her vision therapy enters what looks to be its final phase.

Happy Easter, everyone! I wish you jelly beans in only your favorite flavors, and happy relaxation from head to toe.