Milestones

Update! I just launched a podcast: How do we deal?!

Posted on by amberhj

A quick heads up. My friend Dara and I just dropped the introductory episode for our new podcast, How Do We Deal?! Coping with the Confounding. NBD.

Truthfully, after over a year of effort, this is a huge milestone for us!

The premise? We’re all struggling with the unbearable weight of issues that society just can’t seem to solve—while finding chronically missing phones, making infinity dinners, and replying to inane work emails. So how do we deal? With some colorful and transparent commentary from me and my co-host, Dara, and helpful insights from occasional guestsperts.​

Here’s where you can listen to How Do We Deal:

Apple Podcasts
Spotify
iHeartRadio
Podcast Addict
Podchaser
Deezer

Readers of this blog know what my daughter and I went through when she was little, from her tube feeding and vision challenges, to our journey to understanding that we are both neurodivergent (ADHD for me, autism and ADHD for her). I fully believe that those difficult experiences informed who I am today, giving me strength and perspective I would not otherwise have. All of that comes through in the podcast, along with gem after gem from my dear friend Dara, who brings a unique backstory, outlook, and wisdom, especially having grown up as a brown girl in our white hometown.
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Special thanks to the amazing Amanda Zorzi for our amazing intro music and to the ever patient David Santos for editing the podcast.

You can also check out the How Do We Deal website and blog.

Endless gratitude for all who take the time to listen, follow, and support this new venture.

Note: Please bear with us. Sound quality skyrockets around episode 4. Don’t you love a good learning curve?!

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”

 

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).

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.

Re-entering the ring: Stella the Spella!

Posted on by amberhj

Just a few small updates for now.

Stella can spell her name and delights in doing so. I’m extremely proud of her, as you can imagine. I suspect she’ll start spelling other words soon. She’s making a habit of quickly rattling off the letters in the words she sees. I have to say that it’s encouraging, vision-wise, to hear her say the letters one after the other, so smoothly and accurately. Maybe I’m over-thinking it, but I’ll take it. Bam!

She’s turning into my little kitchen helper. Tonight she had cheese-sprinkling and cauliflower-tossing duties. She kept moving her stool from one station to the other, requesting to check on the dish in the oven, and nibbling leftover chopped onion, shredded cheese and avocado–oh and a slice of lemon. She’s proud of herself and the results, more invested in the meal, and I have less to clean up. Bingo!

Stella is a gymnast now. We go once a week to a nearby gymnastics academy, and many of the exercises we do there are identical to ones recommended by our vision therapist (like animal walks, donkey kicks, etc.). Of course it doesn’t feel like therapy. It’s just fun! And Stella is quite fearless and adept! She can walk the entire length of the balance beam by herself with her arms straight out, do somersaults down ramps, hop like a bunny down the bouncy track, launch herself into the foam pit, and pull her feet up under the bar when hanging from it. She’s so strong. Her enthusiasm overflows.

She’s owning her current at-home vision therapy, which includes use of flippers for near work (hand-eye coordination stuff) and red and green overlays side by side on the TV with red/green glasses (five minutes each way). Stella breezes through these. We work in vestibular activities here and there, too. My current goal is to purchase a toddler-sized pair of the yoked prism goggles. Having access to them only once a week is creating too much stress and pressure. Getting our own pair is the solution to the currently upsetting and unhealthy situation. Despite my efforts to stay neutral  during goggle time, I’m sure she senses my expectation and feels pressured–it’s time to take that away. It’s time to be reasonable and not expect her to tolerate them for a large chunk of time once a week and allow ourselves to break it down into more comfortable, age-appropriate pieces.

Tomorrow we return to vision therapy, in a new afternoon time slot after an illness-induced hiatus. I’m bringing a document I’ve typed up that outlines suggestions for making vision therapy more beneficial and less stressful for Stella, including the need to purchase our own pair of goggles. I know Stella best, after all. And I want to make sure I’ve done everything I can to make these sessions work for her, instead of producing such angst (for both of us). The new non-morning time should help, but there are more creative, thoughtful strategies we can implement, or at least try. I’ll share the ones that work, along with overdue descriptions of how creative solutions have helped make home-based exercises successful. You’d laugh if you peeked in our window and saw the silly things I do in the name of vision therapy. You’d be amazed if you could see how far Stella has come with specific abilities, how resilient she is, and how wonderfully willing she usually is when it comes time to play her “eye games.” And you’d be shocked if you could witness how such small adjustments can make all the difference!

There’s always hope if you ask me. We may get down after a rough appointment, but we never give up.

 

 

Hoo! Boo! And booyah, too!

Posted on by amberhj

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

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

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

A new take on "boohoo"?

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

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

Hope your Halloween was wonderful, too.

I cry more than the babies in “Babies”

Posted on by amberhj

I just watched Babies. Finally! And I cried a lot. Did anyone else have that reaction?

Must be because I had severe anxiety from the moment Stella was born. Seeing sweet, simple moments from the four babies’ early months made me wish I’d been less insane and better able to enjoy Stella’s. Even in the more stimulating environments of Tokyo and San Francisco, I sensed more calm than I remember from those days. I loved her with fiery intensity immediately, but there wasn’t much time to be joyful. I was hyper-vigilant, exhausted after being awake for two days during her birth, and worried about everything even before her feeding problems began. I remember looking out the hospital window right before being sent home and all I saw was grayness, trash and hard corners. I distinctly remember thinking, “The city is so harsh. I don’t want to take Stella out there.” Sometimes I wonder if my stress played a role in creating the medical issues that damaged Stella’s intestinal tract while kicking my anxiety into the stratosphere.

As I devoured every moment of Babies, I felt a sense of longing and even a touch of grief. I just watched it, during Stella’s long afternoon nap, with a cup of chai green tea and a cozy, thick, fleece blanket on this chilly, rainy late summer day in Seattle. The exact same weather marked Stella’s first day on earth. I remember that Cody admitted to me that he found the rain sad, wishing for sunshine on her birthday. But later that day he broke the big news to his best friend, who pointed out to Cody that rain was perfect. It makes new life possible and helps it grow. I now realize Cody was struggling right along with me, though his friend’s words did wonders in that particular instance.

On THIS rainy late summer day two years later, I was able to just relax and watch a movie. Stella and I met up with a friend for lunch today, after a leisurely morning at home, during which she and I ate lamb and pita and I held a real conversation with another adult while she played. We’ll probably just take a walk in the rain when she wakes up. When Cody comes home, we’ll have dinner together. Maybe, just maybe, we’ve got a bit of that elusive peacefulness now. In between tantrums, of course.

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.