The value of seeing differently

“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.

Another education

As we look to rebuild after everything fell apart, once again, I’m struggling to find the thread that ties it all together.

The entrenched feeding aversion that led to an NG tube as a newborn that brought us to a new understanding of autonomy. The terror of seeing her eyes suddenly and persistently cross, requiring eye patching, vision therapy and bifocals, then eventually arriving at a place where anxiety didn’t dwell and acceptance ruled. The arduous therapy of all kinds, producing tearful meltdowns, impossible breakthroughs and, ultimately, decisions to let Stella truly be Stella. The ignorant resistance then wholehearted embrace of an autism diagnosis, rooted in an awakening to the beauty and courage of difference. And now, the perilous social-emotional decline of the last two years in public school, with our next destination, and certainly an upside or lesson, nowhere in sight.

Public school is not an inclusive environment for neurodivergent kids. The enormity of the system and its disregard for the wellbeing of kids like mine is breathtaking. Individual teachers care, yes. But they are trapped in a machine that is decades behind in its understanding of neurodiversity and hopelessly constrained by tax dollars in a society with an eroded social compact.

There are so many individual parents, like me, taking on Goliath day by day, step by step, toward a livable, non-toxic educational placement for their child. But it’s painstaking and isolated. So excruciatingly hard-earned as to be out of reach for many, whether due to a lack of time, access and awareness, or financial resources. I try not to think about the costs of hiring an education advocate, exploring therapies to patch the damage of rejection and constant misunderstanding, resorting to emergency mental health evaluations, sourcing private neuropsychiatric reports every two to three years, and securing legal representation to put down some semblance of a foot to stop the machine from destroying my child. All while supporting a girl on the edge, teetering on despair in any given moment, spark still flickering but dwindling fast.

How do we create a better educational system and world for autistic kids and all those who are socially different? It starts with sharing what we know and, I believe, connecting those individual dots of effort and resistance into a cohesive movement.

It’s hard to know what to do on a daily basis. How to make some small measure of progress rather than wait around for another deadline or threat. Reading the work of autistic adults is invaluable. As is connecting with those in similar shoes. I also have a new hobby, sending very direct “feedback” to researchers whose papers innately pathologize autism and interpret difference as disorder, so deeply offending them that you’d think they were the ones with nine times the average rate of suicide and 80% unemployment regardless of education or qualifications.

I have been working full-time for a nonprofit that promotes neurodiversity employment. But it’s like shouting into the wind, it doesn’t use my true strengths in writing and creativity aside from a general passion for communicating about the topic, and I don’t think I can continue while ensuring Stella gets what she needs. Lately, I can’t seem to focus on anything but making sure she’s okay. I mean, I really can’t. Just like during those early days with the tube and the glasses and the worry about what it means to be autistic in this world.

We’re in yet another chasm, Stella and I. But we’re down here together. And all those times over the years when we’ve fallen at the foot of impossible and gotten back up to say “no” and prove it wrong—whether within individual moments or spans of months or years—are informing us now. The stakes grow higher along with Stella, who now stands five foot three. Time to rise up.

To Parents in the Storm

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

 

 

 

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

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.

Humanity’s Awakening: Pink toenails on boys and media tantrums are all good

As someone who owns a gorgeous multi-hued J.Crew scarf and wears it every single day as evidence that she has, in fact, not “given up” and abandoned herself, I am a fan of the company. Once in a while, the kids catalog features uber stylish children in glasses, and they even sell kids’ frames. So J.Crew has won points with me, and frankly, too many of my dollars.

But I didn’t know about The Shocking Pink Toenail Incident of mid-April until, belatedly, I watched The Daily Show’s brilliant take, “Toemageddon 2011.” Cody and I appreciated how Jon Stewart highlighted the lunacy and sensationalism of the coverage surrounding a five-year-old boy’s pink toenails, and we loved his point that weekends with kids are looooong and that parents will do anything to fill the time. Let’s just say that this resonated with us. Cody laughed so hard, he cried. Hopefully it was a feel-good, hilarity-induced cry and not a “oh my god what has my life become” cry. Side note: He just left for the playground with Stella and a pink, Glenn-Beck-approved potty.

Yay for smart people like Nerdy Apple Bottom and Joseph Alexiou who have brought reason into the discussion, pointing out that it’s perfectly okay for a boy to like pink and for his mom to paint his toenails (though the picture just shows smiling and pink toenails, not any actual painting), and that the negative reactions were offensive, not based on fact, and rooted in prejudice and even hate. What I want to add to the discussion is that the disproportionately outraged reactions are a good sign. Baffling and ignorant on one hand, but on the other, somewhat encouraging! Yes, people like “Dr.” Keith Ablow have made outrageously judgmental and close-minded remarks about a photograph of a mother (J.Crew’s Jenna Lyons) smiling at her happy, healthy son. Sad. But in a way, it just proves that Ablow and Co.’s world view is on the way out. And they know it. And they don’t like it. They’re scared and angry. So they’re throwing a tantrum while smart, open-minded folks use it as motivation to rally together to refute those attitudes and send the opposite message.

Duh! An awakening is, like, unfolding in humanity! Sounds cheesy and dramatic, but it’s actually an “everyday” sort of thing. I know many people who’ve transitioned to more meaningful (to them) careers–rejecting what they were expected or “supposed” to do in order to pursue exciting alternative paths. Here in Seattle, I know countless openly gay men and women (to even have to say “openly” seems oddly insulting) who are living beautiful lives surrounded by endless support and love. In fact, I’m jealous of most of them. Like thousands of other women who are now mothers and managers and whatnot, I played middle school, high school and college basketball. Acupuncture is covered by our insurance plan. (Stella’s tremendously helpful vision therapy? Not yet. But I know that will change.) All of these day-to-day things are actually the product of huge shifts, and downright amazing when you look back even just a couple decades.

Individual freedom and acceptance is on the rise, folks, and it’s nothing but fantastic for humankind as a whole. Happy people feeling good about themselves as they are, doing what they love? They’re naturally comfortable with (or better yet, completely indifferent to) pink toenails on boys, and human differences in gender identity, sexuality, race or whatever. Because why would a happy, fulfilled person be bothered by others’ happy, fulfilling choices? It takes courage to step out and be yourself but an increasing number of people are that courageous, and they are going to save the planet. (I can’t believe I figured that out. You’re welcome.) They care about people and issues, and have energy and compassion. Perhaps somewhat ironically, they don’t “need” as many things from J.Crew (though a scarf like mine is really is a must for every woman over 30) and they are way more likely to, say, choose foods that are good for them and the earth. Let’s face it. People who lack self esteem, resent others, or feel trapped in lives they hate aren’t pushing for better recycling programs at the office. How can we create more empowered and, as a major bonus, eco-friendly humans? Let’s try addressing poverty and accepting differences. (The aforementioned people who are being called to more meaningful lives–they already do stuff like that.) You don’t help anyone by going on national TV and shaming five-year-old boys who like pink. Not a very “manly” thing to do, really. Touché!

Clearly, the movement has been happening for, to use a precise measurement, “quite a while.” In many countries, women are no longer housebound pieces of property threatening to faint at any moment. Yes, we’ve miles (and miles) to go, but we’re gaining speed. Rigid boundaries are in flux as more and more people pursue authenticity, a way of living and being that is right for them. Maybe parents won’t so much raise boys and girls as they will nurture individual human beings. Jenna Lyons’ son loves the color pink, and he was obviously very happy in the moment shared in that ad. His mom wasn’t “doing” anything “to” him. Just smiling at him and enjoying the moment. Okay, and executing some spot-on brand marketing. But still.

Yes, there are troubling counter-forces at work that are in fact “doing” things to–namely warping or manipulating–our children’s perceptions. For instance, early sexualization of girls is a major and serious issue. The obnoxious and highly strategic marketing messages that carefully target children are hyper-inflating the gender divide in order to sell more crap. But parents are pushing back against inappropriate clothing, toys and messages. Gender-neutral baby clothes are growing in popularity as people grow weary of pink/blue apartheid, which is a recent phenomenon and not evidence of “hardwired” preferences. I hope that one day, advertising to children will be banned so they can more freely decide for themselves what is acceptable, what feels right. Because right now? Billions upon billions are being spent to teach them what to want and like. To convince them of very specific ideas about what’s acceptable and desirable for boys and girls. Not cool, Disney.

The anger and fear, seen in the overblown media reaction to a smiling five-year-old’s pink toenails, is telling. As a mother of a toddler, I know a lot about overblown reactions. So I know what this latest media frenzy truly is: An extinction burst. When you stop responding to and inadvertently rewarding a toddler’s tantrums (and this decision is based on your infinite wisdom and unflinching good reason), they pitch more fits, more intensely, for a while. They sense the paradigm shift, want to retain an old dynamic that gave them control, and so they kick things up a notch. They kick and scream ten times harder than before. Then, taking sideways peeks at you in between shrieks, they wait for you to give in.

Luckily, in the case of humanity, there will be no giving in. No going back.

P.S. Also? That boy’s mother, Jenna Lyons, is President, Creative Director and likely soon-to-be CEO, of J.Crew. So stop “worrying” about him, media! He’s going to be fine. Unlike, say, the kids living on the streets of L.A.’s skid row, whom you never talk or worry about. Lucky for this kid, his mother could buy and sell Keith Ablow ten times over.

P.P.S. The offending polish, featured in and linked to from the pink toenail ad, has sold out. Per the J.Crew website: “We’re sorry. This item has been so popular, it has sold out. We’ve got other great ideas–just call us… we’re here to help.”

An inevitable dip in the roller-coaster ride

When Stella gets really upset about anything at all, her immediate, go-to move is to tear off her adorable purple glasses with one hand (OUCH!) and throw them, with the force of every ounce of rage she’s got. Though to be fair, in the rare minutes when they are off, she will sometimes ask for them. And objectively speaking? Her specs simply handy during tantrums, as they happen to be the closest toss-able item. My point, I suppose, is that sometimes, despite my obsession with her eyes, it’s not all about vision. Not every fit or glasses-tossing, or vision therapy refusal has to do with her visual system! She’s a toddler, for crying out loud. Today, she’s getting a cold–her nose is running. She could be teething, as she’s complained about her mouth hurting and chewed through several pacifiers (disclaimer: we plan to get rid of them very soon!), too. Any of these things could explain her aversive behavior lately. Mind-boggling mysteries of the toddler mind abound, and I’ll never solve them all. But a pesky fact remains: Vision therapy has gotten tougher. Patching, too. I’m stressed out.

I fully believe in vision therapy, but as of this moment, I’m not 100% sure of our current ability to keep up the regimen with proper diligence. I always wonder if we’re doing enough. Some days–like, oh, TODAY–Stella resists patching and “eye games” like it’s a form of medieval torture. Of course I don’t blame her. If she doesn’t feel like being still or finding matches or attempting whatever task I’m presenting (though I always try to provide two options so she can CHOOSE), why wouldn’t she be annoyed? She doesn’t truly understand why we’re doing all of these exercises every day. It must be confusing and frustrating when I insist that she stick skewers into straws or put on awkwardly large red/green glasses (okay, I’ve taken out the lenses and taped them to her specs instead–am I a rebel or what?) and find matching shapes on weird-though-now-way-too-familiar cards, rather then go to the park, have a tea party, or paint.

To be clear, despite the bumps in the road, I have most often felt certain of Stella’s continued visual improvement. Like when she says, as I reported recently, “I can see with BOTH eyes, mommy!” Or when she does the balance beam, a two-feet high, 4-inch wide one at the playground, all by herself. Or when, early on in her vision therapy journey, she stopped during a walk we’d taken a million times, to feel the rocks that stick out of the concrete beneath our feet–something she’d never done before. We know that she made great strides during her first three months of vision therapy. But we’re well into our second three-month segment and it’s becoming more of a battle. I worry that her increasing lack of cooperation (corresponding with my increasing and decidedly unhelpful frustration) is a worrisome reflection of visual difficulty that should be resolved by now, and/or that this behavior may make real recovery impossible, at least in the short-term.

I’m not giving up. I’m just a bit worn down. The stakes are high. We invest a lot into Stella’s therapy, financially, emotionally and time-wise. The thing is, the stakes don’t need to be this high. They shouldn’t be this high. Vision therapy is supported by decades of evidence and research, and should be more widely embraced. This would take a huge burden off of families like ours, and improve outcomes for children.

I have a lot of anger about health care in this country. By the time Stella’s course of vision therapy is over, we’ll have spent somewhere around $20,000 on much-needed care for sweet Stella that was not covered by insurance. The stress and pressure created by our system does not help Stella, or our family as a whole, thrive. We don’t yet own a house. Our one car is a dented 2003 Ford Focus (tan and blah and not me at all but it works!). I still consider us lucky, but we are definitely and uncomfortably stretched. Outrage takes over when I think about Stella and other children, who by no fault of their own need extra help in order to survive and flourish. What if we couldn’t have used our nest egg to fund $1,000 in hypoallergenic formula each month to help Stella survive as a baby? Maybe they would’ve stepped in when she was seriously ill, having been forced to ingest formula (or breast milk) that was literally killing her. A letter from her pediatrician insisting that Elecare was a medical necessity did nothing. Formula was conveniently “excluded” under our plan. (It’s so abhorrent to me that I’m having a hard time writing about it without becoming extremely emotional.) Now, with vision therapy, not only do we lack support from the health care system but also most doctors. Maybe they’d help us out when Stella failed to learn to read? When she started rejecting school altogether? It’s the signs of progress and Stella’s happy demonstrations of new abilities that keep me going. They’re worth every penny and more! It’s her natural, toddler-appropriate resistance, combined with incredible pressure to see results due to exorbitant costs, that make times like this so hard. My reactions to her lack of cooperation may be overblown, due to the fear created by the situation. Maybe I push her too hard at times, out of desperation, making it all worse.

This is all really honest and dark. I’ll emphasize that on daily basis, we’re doing okay. I really, really try to make the exercises more fun and rewarding. In a forthcoming blog post, I’ll share the little successes I’ve had in that area, and explain the adaptations that have helped with gaining vision therapy cooperation with a two-year-old! No small feat. I totally enjoy devising solutions that make her exercises palatable. When it works and she has fun while doing highly beneficial therapy, I’m incredibly fulfilled and uplifted. It may sound completely insane but the idea of actually BECOMING a vision therapist has crossed my mind. So that I  can work with her long-term, at her pace, at a slightly older age when she is perhaps more able to focus her attention, without driving us into bankruptcy. I’m only half kidding when I say that a vision therapy education probably wouldn’t cost too much more than Stella’s vision therapy itself.

This morning, Stella really resisted patching. Which is what sparked this wave of doubt and prompted me to analyze why I feel so much pressure… why the stress is mounting. But it may have nothing to do with her vision. And my worried questions about Stella’s vision can be addressed to some degree during her weekly in-office sessions, which is immensely helpful. In addition, I’m trying to get help with her at-home therapy, stocking up on chocolate chips (the ultimate, last-ditch incentive for cooperation) and hanging on until her next progress evaluation next month, hoping to get the reassurance we need. Ideally through some sort of computer-based testing rather than reliance on Stella’s ability to call out what she sees during testing. Because LORD help us if she’s teething or tired.

To feel like we’re standing on semi-solid ground–that would be a gift. I know we’ll get there. I do. In the meantime, I hope that in some small way, perhaps just by sharing our story or calling out the lack of support, we can make it easier for those that follow.

 

A crime of passion. A lesson for us all.

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

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

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

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

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

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

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

I rest my case.

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

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

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

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

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

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

What the crap.

Skyping with Stella's grandparents always cheers us up.

Skyping with grandparents cheers us up.

So, we’re dealing with what shall be known as “The Great Glasses Adjustment of 2010” (also referred to as “Operation Straight Eyes”) when at some point last night, Stella developed a cold, and some jerk broke into my humble tan sedan. Probably at the same time. I somehow left my now stolen iPhone (which I got for $99, refurbished, so don’t get the wrong idea about my spending habits) on the seat after a late-night grocery run to fetch staples for Stella and dinner ingredients for tonight. And I know what you’re thinking, but no. I don’t resent the fact that the fancy Volvo station wagon parked in front of my dented Ford Focus was left untouched.

We quickly replaced the smashed window, the remnants of which Cody spent the morning cleaning up, rather than working out as planned. He cut his hand, but not too bad. Between optical expenses, ER bills, theft, and broken windows, we are hemorrhaging money. I think I just saw a fat-ass fly ride a twenty dollar bill out the window like it was a magic carpet. Because money is just getting more and more creative about how to get the hell out of here.

Stella’s hypoallergenic formula, a.k.a. gastronomical gold dust, wasn’t covered by insurance after she was weaned from the tube, so for about eight months, we spent $1000 on Elecare every thirty days. Our household ran at a deficit–we haven’t had credit card debt for a long time and didn’t accumulate any, but our savings withered. There were also many, many tube-related ER trips and a hospital stay during that time. Over-the-top expensive, but to be honest we didn’t think much about it, because of the urgency of Stella’s healthcare needs back then. Cost didn’t really matter, because we had our savings to fall back on and because we just wanted her to eat, no matter what it took, and before too long, she did! Well, very recently, we’d finally caught up were able to send a chunk of change to our neglected nest egg. Now we’re taking a step backwards, further away from our financial goals. But that’s life. We’ll bounce back. I’ll get some project work. Come hell or high interest rates, we’ll own a home soon, and we’ll appreciate every nail in every floorboard, every drawer that opens and closes smoothly without creating sawdust, every annoying, costly repair that at least reinforces the home we own.

Do you believe in The Secret? I used to be pretty pumped up by it. Now I’m totally embarrassed about that. The Secret, at least in the form this concept took in the movie, creates the illusion of complete control over life and wealth and circumstances. Yes, that ever-elusive sense of control. Which is probably why I loved it so much at first. Not that there’s no truth contained therein. I do think that our attitude and beliefs to shape our world in powerful ways. But it’s not that simple. Some things really are beyond our control. We can’t avoid all disaster or disappointment or difficulty just by looking in the mirror and telling ourselves how wonderful and perfect our lives, bank accounts, and vision are. But we can choose how to respond, and make the best of it. What an old-fashioned idea.

I’ll buy a new phone, move on, and take care not to leave it or anything else of value in the car. Besides, the joke’s on them! Those stupid thieves didn’t realize Stella’s car seat was worth about three times as much as the iPhone. Though, it’s probably not quite as easy to tote around while lurking in an evil fashion along the streets looking for more shit to steal from stressed out, absentminded moms.

Here’s an attempt at a point. Why am I so quick to blame myself for everything? I don’t think that way about other people. Obviously, Stella didn’t do anything to deserve or “attract” a feeding tube or accommodative esotropia. And all those kids starving in Africa, and those hungry here in this wildly unbalanced country of ours? You think their bellies are grumbling because they don’t know The Secret? Right. I bring this up because part of me does wonder how I could’ve brought all this upon us. (Possible answers: My negative attitude. My dissatisfaction with our rented home and distance from family. My impatience.) But there’s another voice that is out of breath from jumping up and down while yelling loud enough to be heard: “It could be a lot worse, you idiot!” See? Even this voice is self-deprecating. It continues, “You are still very lucky! Remember all the things and people that are right and beautiful and decidedly not stolen!”

And hey, you know what? There’s this. Stella did a pretty fantastic job wearing her glasses today. At some point, she sat on the big chair by the window and counted to ten while smiling. And I got a free triple latte from Fuel today–they said the machine was acting up, but I think the barista knew I needed a boost. It’s a start. I’m grateful for that and a whole lot more.

Put me back together.

Ouch.

"Stella! No, use two hands! Gentle! Ah, crap. Just hand them to me."

Cody, Stella and I were all over at Cooper’s house the other day while his parents enjoyed a date night, an event that Cooper (Stella’s best bud and play-date companion)  refers to as an “update,” which really makes sense if you think about two parents going out and spending time together away from their one-year-old. Music is almost always playing while Stella and Co0per are together, because they love to dance (which looks a look like jogging–actually, sprinting–in place) during play dates and within five minutes of arrival one or the other starts in with, “Music? Musiiiiiiiic?” So, we’re intermittently bopping to the music and sending miniature skateboards down ramps when this irresistibly sweet, poppier-than-pop song by Meaghan Smith comes on. The chorus innocently asks, “What’s the use in fixing what’ll only break again?”  And good lord did it hit the proverbial nail on the head. Pesky tears invaded my eyes and a boulder lodged in my throat and I just danced toward the corner until it passed.

As you now know, Stella got her glasses on Friday. We were in the optical shop for an adjustment today, Monday. Already. At first, on Friday morning, I thought she was taking to them amazingly well. She wore them for a long stretch on the playground, briefly removed them and asked me to put them back on while in the car, and she wore them all through lunch. But now I’m realizing that her initial interest can be chalked up to sheer novelty. The more she realizes they’re sticking around, the less wants to do with them. Usually, she’ll wear them for two to five minutes before ripping them off with one hand, stretching the frames in a way that looks like nails on a chalkboard sound. It’s excruciating to see her twist and throw them. But it’s not just that. It’s tough because it’s such a battle, actually more of a war with many, many battles taking place and well-thought out strategies and tactics required for victory. It’s stressful and exhausting to see her tear them off, and then my brain starts whizzing, as in, “Okay, how long can I give her before I put them back on? How long before her eyes are in danger of crossing? What will I distract her with this time–a book? No, we’ve gone though all her favorites already. Stickers! I’ll try the stickers.  What if she doesn’t let me put them on–for the fourth time in a row during these last few minutes? Should I put them in the case for a while or is that like giving up? Wait–have I eaten yet today? When does Stella need to eat? Maybe she’ll wear them if I give her some chocolate chip.” Cue the screaming.

Like a well-programmed mombot with super human strength and endurance (but not really), I automatically bend over backwards to repair a fragile something that is forever poised to break. The glasses. But also something in me (and maybe Stella, too?). When Stella got over her feeding aversion, no longer required a feeding tube and learned to enjoy eating, I thought we were clear. We were going to be okay from then on. But it wasn’t true. That’s impossible, and every parent on earth faces the same perilous reality. There’s always another challenge, frustration, or heartbreak around the corner. Thank god they’re so damn cute and resilient. And for every soul-searing ER visit and agonizingly difficult hurdle that you somehow muster the strength to clear, there’s–oh, where to begin–thousands of laughs that lift you up so, so high, dozens and dozens of triumphs that affirm you, your child, and life itself, and about seven hundred smiley, silly dances. Not a bad bargain at all, even if the song makes me cry.

She’s worth it a million times over.