parenthood

The risk and rewards of giving a flock

Posted on by amberhj

If you’ve ever kept chickens, you understand life’s imperfect trade-offs of risk and reward in a more intimate way than most. And if you’ve ever medicated a chicken, you understand the delicate tipping point at which fear-fueled fight-and/or-flight teeters into resignation to fate. There’s something eye-opening about caring for a living creature so different from yourself.

We have five chickens, down from six after losing one of two Black Minorcas. In a gross turn of events, all needed to be dewormed early this summer. Turns out occasional worm infestation is a natural occurrence for many animals and a cost of freedom for chickens. Part of opting for quality over quantity of days and months and hopefully years. Exposure to the glories of sun and soil and air and grass, as well as the threats of bacteria, viruses, and attacks (oh my) from wild birds and animals. That’s the choice we made for them. Really, it was the choice I made because after the first visit from a robustly healthy red fox with loads of casual confidence, who lounged by the coop one morning as if expecting a waiter to appear with a cocktail and hors d’oeuvre, Stella wished to keep them locked up for their safety and her peace of mind. We had many discussions about the pros and cons of captivity for chickens, and never quite saw eye to eye.

As far as I can tell, a good life for a chicken unsurprisingly centers on a form of self-determination. It’s the ability to forage freely as part of an interdependent flock, and little else. It’s certainly not found in days spent standing in shit, whining and pacing. I know a thing or two about the human version of that.

One of our chickens, a Welsummer named Brownie, is so hard to lay hands on that during one pursuit, Stella brilliantly suggested we turn this chore into an actual sport. The thing is, this particular chicken never, ever seems panicked like the others. Just calm, focused, utterly determined, and highly skilled. Truly, Brownie could put the NFL’s most elusive running backs to shame. We’ll have her cornered, only for her to defy gravity by deftly leveraging wall-as-vertical-launchpad. You bend down, thinking you have her, at which point she will go up and over your useless hands with a quick ping-pong maneuver. Or she’ll pull a lightning-fast nutmeg and leave you in her dust, red-faced. Smooth as butter, easy as pie. That’s classic Brownie.

Out of desperation and exhaustion, we use sunflower seeds to entice and distract the birds, effectively luring them into a frenzied heads-down treat fest. It works or at least helps, most of the time, on all but the remaining Black Minorca named Floppy. She is Brownie’s polar opposite, such a flighty, untrusting bird. I struggle to categorize her as a “domesticated” animal, because she appears scared, wild, and wide-eyed at all times. In keeping with her old Spanish breed, she’s lean and aerodynamic, thanks to sleek black plumage and crackling, electric nerves. Floppy was named in a nod to her large, waving red flag of a comb, which flops over to one side, higher in the front and stylishly low in the back, a red beret on a soldier whose default mode is manic, all-out retreat. She is not brave, has zero dignity, but is impossible to capture.

The other Black Minorca, named Biggie and taken too soon by a fast-moving illness of unknown origin, did have courage and perhaps an inkling of a chicken version of dignity. It’s probably what did her in. She once flew up to the edge of the roof of our house. Claws raking and clacking against the metal flashing, she almost landed the ultimate perch up there, in outer space.

Biggie could also be found out on the sill of the window in front of my desk as I worked, side-eyeing me from outdoors like a peeved middle manager. Her fiery comb was huge, bright, and straight, and she was at least 20% larger than her Black Minorca sibling and all the other birds, from chickhood on. When an ailing raccoon languished like a furry drunk in the small creek bed beyond our back fence, Biggie did not leverage her apex status within the pecking order to lead the girls to safety. She stood at the fence and shrieked as if outraged at the raccoon, with the flock of her followers chiming in from behind her. It’s no wonder she was the first to go, but what a legend among hens.

Stella loves these insane chickens fiercely. She counts all five (six before the loss of Biggie) as members of her menagerie, which also includes her rescue dog Kansas, a mix of Border Collie and Corgi, and a Netherland Dwarf rabbit the color of chocolate and peanut butter, whom Stella named Reese. She observes the chickens closely, studying the emotive qualities of their changing noises and quirky behaviors in an attempt to understand. “What do you think she means by that, mom?” Sometimes I detect worry in her questions, sometimes pure amusement.

I have begun to think our flock was a well-intentioned mistake. Initially I thought it would be so fun and a source of daily interest and helpful work for Stella, perhaps even an added sense of purpose. But she is so attached to them, so worried about their wellbeing, that at times it feels like a trap. Like I’d set her up for a certain heartbreak, six times over. Stella’s depth of connection with animals, I realized, would make the loss of these feathered aliens more painful than I, decidedly not an “animal person,” can understand. She already lost two grandparents over the last couple years, moved across the country, and went through hell at school, barely making it through this last year.

We lost Biggie so suddenly. She became lethargic one morning, her once proud comb wilted, sickly pale, and blotchy–and died the very same day. Yet Stella handled it with more grace than I ever would have expected. She connected the loss to a graphic novel she’d read about a misunderstood witch who buries roadkill to ensure the animals’ peaceful transition to the next life. I would find out later that here were indications, in Stella’s writings at school, that the death weighed heavily on her.

In the aftermath, there lingered the possibility that whatever killed Biggie was highly contagious and the rest of the flock could follow. About a month after Biggie’s passing, all seemed well and I stopped worrying. That’s when our Crevecoeur named Bex, with her ridiculous poof of black plumage as signature look and anti-Darwinian vision impairment on top of her head, started “gaping,” seemingly gasping for air or struggling to swallow. Stella thought it looked like yawning. I knew it wasn’t. Could it be the same mystery ailment that took Biggie? Bex is Stella’s favorite chicken. Of course.

Coming out to open the coop in the morning, I would notice Bex with her back to the rest of the birds, standing like a statue in a world of her own, wind tousling her poof. This forlorn and ponderous chicken of French origin seemed to stare out into the woods mulling the futility of it all. No longer in sync with the shared flock mind, but contemplating the shrinking of one’s world that is prompted by the gaze of the other–what a truly disorienting realization for a chicken. I suspected gapeworm, but hoped for an existential crisis. I placed an online order for Sartre’s “Being and Nothingness” and a goat dewormer that could be safely used on chickens with the correct per-pound dosage.

As a general rule, Stella needs to be reminded of certain fundamental daily tasks, many times over, especially in regards to self-care. But I never, ever need to remind her to close the coop at night or help me with the chickens’ medication. She does these things unwaveringly.

While we usually wait until evening to dose the chickens, by midday Stella will inevitably say something managerial like, “Mom, just a reminder to help me with the chickens’ medication today.” Then, in between conversations sparked by Stella’s many daily questions ranging from “Do people keep shrimp as pets?” to “Are we really getting out of Afghanistan?”, she will mention it again and again. I appreciate her persistence, because I admire her empathy for and dedication to the animals and because due to my lack of dedication to the animals I’d likely forget. The reminders keep coming until a specific time is selected or medication is in fact dispensed.

A chase ensues, causing serious questioning of my own dignity, until Stella picks up a defeated chicken, holding her securely under her arm like a football and grasping the feet together to avoid getting scratched by dirty talons. Hand over the chicken’s impossibly tiny head and covering her eyes, I open the beak with my thumb and middle finger, gentle but firm and holding fast until, as if some switch is flipped, the chicken accepts her destiny and relents. Using a dropper, and totally weirded out, I dispense the milky white liquid onto the bird’s pointy little tongue, ensuring the medication is swallowed and not aspirated. I let go, the now calm chicken contentedly swallows the dose, and Stella releases the bird who immediately pecks the ground and returns to chicken business as usual. This is how it goes–for all except the Black Minorca named Floppy. For her, we have to wait until cover of night.

Last summer, we had to break the flock of their sneaky habit of roosting up in a large, dense shrub at the edge of our property. But these days, come sundown, they return like clockwork to their coop. That’s when Stella opens its little back door, crouched down with her eyes at claw level. Stella can then easily grab a sedate Floppy from her roost and only then does a struggle begin, sharp dinosaur claws wildly flailing, beak frantically opening and closing, body and neck contorting every which way–some seemingly impossible. Then the usual process unfolds, with more firmness and determination on our part. We remind Floppy that we’re just trying to help her, goddamnit. That her life is at stake and we don’t like doing this any more than she does! She finally gets the message, relaxes, and our medication duties end for the day. It’s our turn to relax.

Their course of dewormer complete, Bex still gapes occasionally (of course) but she is acting “normal” and no longer lost in thought. She and the other chickens seem fine. The goat medication was likely their savior, not the refresher on existentialism, but we’ll never know for sure.

We both hated medicating the chickens, Stella and I. But when illness strikes, unavoidably, it simply has to be done. Maybe that’s one of the reasons that at the end of a good or tough day, white knuckle moments and all, keeping our flock is not a mistake. Just another sometimes hard thing with lots of upside, if you look for it.

Another education

Posted on by amberhj

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.

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

Posted on by amberhj

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.”

Blogging. Stella. Me me me!

Posted on by amberhj

Feeling anxious. It keeps being said in the media and whatnot (on blogs, probably) that blogging is extremely narcissistic. I’m worried that I’m not measuring up because this blog is only somewhat narcissistic so far.

You see, I need to write about things in addition to vision therapy but I’ve been afraid to. So I apologize to my optometrist and vision therapist readers in advance.

Obviously, it doesn’t get much more “niche” than this blog. I may not reach too many people but some of the ones who do come here find stuff that is very, very directly helpful or interesting to them or their child. I need to figure out a way to organize the site into clear sections so my three different audiences of subscribers (of roughly ten people each whom I ADORE) can find the niches (great word) that they’re looking for. Or maybe I’ll keep Stella and motherhood stuff going here and start a new blog for other stuff. We’ll see. Deep breaths, everyone. It’s going to be okay.

The three current subject areas are broken down as follows:

  1. our feeding tube weaning journey and associated learning (a ton of my traffic comes here for this)
  2. strabismus, amblyopia and vision therapy experiences, information and associated amazing breakthroughs and fearful frustrations (more and more of my traffic is being generated by this)
  3. random crap that I find interesting or amusing as a mom or writer or wife or human being (no one comes here for this stuff–even my humor is a niche)

I’ll try to figure out how to enable you to opt in only to posts about Stella’s eyes, or tube weaning (once in a while I still find tube weaning information and stories that I’d like to share here!), or random (entertaining, maybe, I hope?) crap. That way you won’t have to deal with the rest showing up in your inbox. Here’s a good example of something you may like to skip. I took it from my Facebook page but find it amusing enough to post here:

Navy Hibiscus Sundress on Zulily

Navy Hibiscus Sundress / Unicorn Butterfly Bait

I am considering this summer dress for Stella, but the product copy is just too cute! I’m too busy rolling my eyes to make the purchase. Am I just jaded? Here it is: “A just-right cotton poplin dress like this one has magical properties, inviting colorful butterflies to land on her nose in between twirls. And after that, maybe a strawberry ice cream cone appears in her hand.” Yeah, and after that, maybe a unicorn craps cupcakes in our backyard.

I love Stella. And I want to continue to share the oh-my-god discoveries (like prism goggles, thanks to Dr. T) that have made such a difference–first for her gastrointestinal tract, and now for her eyeballs. But frankly, she’s really thriving and therefore is not giving me enough material. So I’d like to share other stories involving Stella, but not too many because I want to protect her privacy, and non-Stella-related topics. I don’t really know what to write about at this point or how to do it but I will get there, damn it! I’m a copywriter by trade but want to do other types of writing again (I’ve flirted with “real” writing before). I need to write! About stuff! That I care about! As a whole person! Though I don’t think I’ve been 100% “whole” since those two months when I had to give up cheese in 2008. A small part of me died due to deliciousness deprivation.

The last thing I write will be typed through awkwardly teary eyes. Thank you so much for reading my blog. We (and by that I mostly mean me/I) had some dark times amid the wonderful ones these last couple of years, and sometimes, just knowing that people were reading our story and relating to it or cheering us on or somehow benefiting or even laughing at my desperate attempts at humor–it saved me from really plummeting. This story could’ve gone a lot differently. And the comments. Oh my gawd the comments. Soul-soothing and life-affirming, just like cheese! I’m making a really ugly crying face right now. I wish you could see it so you’d know how much I mean this. Okay maybe not. Phew.

And with that I’m going to go collect a cupcake from our backyard. I ordered the dress from one of those anxiety-inducing daily deal sites–and it’s already working its magic.

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.

 

 

Sucker punched!

Posted on by amberhj

Well, today’s vision therapy could not have gone much worse.

She refused to wear the prism goggles for more than a minute or two at at time. Not only did she kick, throw and scream, she attempted to toss all the folders and paperwork off of Bethanie’s desk with several angry sweeps of her little but surprisingly strong arm. I had to fight back tears most of the time. I enforced a much needed time-out and we ended the session early.

All is not lost, certainly. We realized that on the days we’ve done vision therapy in the afternoons, we make more progress with Stella. Having to wake her up, rush her through her morning routine and have her start these exercises after only an hour of wakefulness seems to be problematic. Next week, we have an afternoon appointment.

Today, I’m getting myself a treat. Today, I’m doing what I want to do and Stella is merely coming along for the ride. I need to focus on myself right now, because the hope and energy I put into her may be too much at times. Like today. I was so crushed. I know it’s definitely not true, but it feels like she just crapped on my head, for kicks.

In closing, for a future in which my dear daughter reading this: I love you so much Stella, even when you were a ruthless tornado in toddler form. That’s why days like today are so hard.

Quotable?

Posted on by amberhj

I have the good fortune to be writing copy for a really delightful web-based company whose product is perfect for moms like me. Currently, I’m both collecting and writing inspirational quotes for their use. It’s fun work, and hilarious at times–in my brain. Especially when I write lines myself that are supposed to sound incredibly wise and timeless. Seriously though, this is right up my alley. My favorite proverb is Japanese and it’s been on my Facebook page and tucked away in an old post on this blog for a while: “Fall seven times, stand up eight.” Yes! That just fires me up! I have the complete pleasure of sifting through wisdom and getting paid for it. I get to let my highest self take over and come up with words that sing. But my mind can’t help but wander sometimes. Here are a few of my so-called “original quotes” that didn’t make the cut (i.e. they came to me and I mentally deleted them immediately, preventing them from being typed into my crudely formatted Word doc):

Get it done. Even if it’s a complete disaster.

Dinner cooked and not cleaned up is better than starving your family.

A snack in time saves a meltdown.

Go outside of yourself, and your home. It’s boring inside sometimes.

A tantrum is just a toddler’s way of teaching you about adversity, and the value of sanity.

You don’t know your worth of until a two-year-old hurls their disgustingly expensive glasses at you.

Be one with the mess. A dirty dish never killed anyone. Except maybe due to food poisoning in the instance that it was used again without washing, which of course you would never even think of doing.

Possiblity lurks in every corner. You either seek it out, or miss out. Or, while looking for it you get sidetracked and spend an hour using the handheld vac to eradicate dust bunnies, hunched over like a maniac never pausing to realize that you could have done it in five minutes using the “real” vacuum.

Time is but an illusion. Unless you’re the mother of a toddler, in which case it’s both non-existent and precious beyond words.

Farsighted toddlers like to keep their mothers near.

A missed nap is but a drop in the ocean of frustration.

The all-encompassing love of a child squeezes the heart and the brain. Take breaks.

Two points of view. One big push forward.

Posted on by amberhj

Big girl

Big girl bed! New purple glasses! Happy Stella.

In the first chapter of John Gottman’s wonderful book, Raising an Emotionally Intelligent Child, my current daily life is illuminated: “Behavioral psychologists have observed that preschoolers typically demand that their caretakers deal with some kind of need or desire at an average rate of three times a minute.” Stella is officially two and a half, 38 inches tall and sleeping in a big girl bed. She has more demands and opinions and upset and glee now than even just six months ago. She’s in some sort of developmental transition period. At times I’m awed and at others, I’m borderline insane. This is a fun but challenging age requiring tons of patience. A tricky age indeed for vision therapy, which requires focus, patience and the tabling of those smaller demands in order to accomplish something she doesn’t fully understand. (I do think she gets it partially, though.)

Stella recently had two evaluations. One with her pediatric ophthalmologist and the other with her developmental optometrist, within about a week of each other. The conclusions by both were encouraging, overall, but quite different. Our intention was to use the results to gauge how vision therapy was going, especially since Stella’s been resisting more. We wanted to figure out whether we should take a break and come back to vision therapy in six or so months, or carry on.

The ophthalmologist determined that Stella’s amblyopic eye is 20/40 but bordering on 20/30. And that her other eye is 20/30 bordering on 20/20. They go with the lowest number, I suppose, in order to crush parents’ spirits–I mean, in order to be conservative and not overestimate visual abilities. (It does make sense.) She very cheerfully told us we could reduce patching from three to four hours to just two hours. I have not told her that we’ve been patching differently than she prescribed. Instead of patching three to four hours a day with an adhesive patch placed directly on Stella’s skin for complete occlusion, we’ve been patching two to three hours a day with Magic Tape over Stella’s glasses lens, and doing vision therapy, which they will hopefully remain ignorant of because I don’t want it to taint their assessment or treatment of me and Stella. It was reassuring to hear her, someone who said Stella may have to patch for a few years, say that patching was effective and that we could reduce it. At the end of the appointment, I asked her, “So, is there anything else we can do for Stella?” She hesitated for a split second and then said, ‘No. It doesn’t matter what they do while patched.’ And that was that.

Hold onto your hats. In our evaluation with the developmental optometrist, Stella showed 20/20 vision in both eyes. This is huge, and I haven’t really come to fully believe it yet–though I saw it with my own 20/20 eyes. It took Stella a tad longer to see the targets with her amblyopic eye, but not too much longer. She could see the chart’s 20/20 line far away and up close, with both eyes. Sometimes answering instantly, when the smiling doctor playfully sang “quickly quickly!” Why there is a discrepancy in performance between the two appointments, I’m not sure. The testing procedures and atmospheres were certainly different. Mainly, more time was taken at the optometrist, with more nuanced testing done.

Randot Stereo Test

Randot Stereo Test

While I was stunned when Stella identified the teeny tiny symbols (bird, cake, etc.) indicative of 20/20 acuity, I was just as thrilled when, during that same optometrist appointment, Stella was able to see three 3D circle images  in the top left section of the chart (the Randot Stereo Test at left). Last time, she didn’t get any of those and saw only one thing pop out at her–the 3D character in line A in the bottom portion of that left panel. Alas, she still only got one in that section. I suspect that her attention span complicates this, and the doctor did acknowledge that it’s possible Stella can see more than she is able to indicate. But perhaps not. As I’m known to say these days, after over-analyzing some Stella-related concern to the point of boring even myself, “Who the hell knows!?” I’m just grateful for the improvement.

The ophthalmologist’s 3D testing was much faster and simpler. Instead of a multi-layered chart with different lines measuring different degrees of stereoscopy, they used a single large image of a fly–the Stereo Fly test, which I learned about on Strabby (more on Sally and her blog in a minute). Stella seemed to try to pet the insect after some coaxing. They nodded approvingly. I wondered what Stella saw and thought and wished she could describe it to me.

I was crestfallen to hear, at the ophthalmologist’s office, that they saw no improvement in Stella’s vision. Yet they seemed incredibly happy with how she was doing. They noted that the acuity in Stella’s amblyopic eye is and has always been above average for her age. Her other eye’s acuity (with glasses, of course) is way above average. They said her vision was developing very nicely.

Both doctors concur that the eye crossing (esotropia), so far at least, has been eliminated by the glasses. Perhaps with help from vision therapy, as I believe the eyes did cross in exam with glasses earlier on in this journey. I haven’t seen Stella’s eyes cross in such a long time as they are aligned when she wears her glasses, which is all the time, excepting bedtime, bathtime and her weekly half hour of swimming (prescription goggles may be in her future) and occasional fits of toddler rage. Stella’s eyes did not cross in either of the recent exams, even after the typical attempts to break alignment. This is huge, often overlooked by myself and Cody, and worth celebrating with lots of wine. I have so many pictures from her babyhood in which I can now immediately detect the not-so-obvious difference in her eyes’ positioning. We also have photos and videos from her ER visit at 18 months of age, during which both eyes were severely crossed (seemingly out of nowhere, though again, we realize now that they’d been slightly misaligned, frequently but thankfully just “intermittently,” her whole life). We keep the ER images as a reminder of why we’re doing all of this. It’s very difficult for me and Cody to view them, because she looked so vulnerable and clearly couldn’t see anything except foggy blurs. But they’re powerful appreciation boosters, and quickly give me perspective when I’m stressing about Stella’s refusal to go to bed without getting up ten times to talk about Papa Bear’s porridge or flamingos or other topics meant to engage me and delay the train to Snoozetown by a good three hours. (And breathe!)

The bottom line is that her eyes–their refractive power and degree of slight astigmatism and as a result, their acuity–are different. It’s refreshingly simple. The two doctors agree on this. It’s the discrepancy between the two eyes that has led Stella down the path to amblyopia.

Both doctors, seeing Stella through their respective lenses, were very positive. Through the course of both appointments, I was amazed, disappointed, encouraged and informed on several levels. I walked away from these evaluations with some real reassurance, but also some points to ponder endlessly and inanely. Stella’s degree of stereopsis (3D vision) has improved wonderfully in just two months, but further improvement is needed. I wish I’d questioned the ophthalmologist more on their take on this. Do they think Stella has normal 3D vision because she tried to pet the fly (I think we called it a bee)? Are they settling by assuming, “at least she has some 3D vision,” or do they genuinely think she has age-appropriate stereoscopy? I wondered aloud to the developmental optometrist: When Stella has moments of experiencing 3D vision, does it freak her out and lead her to suppress her amblyopic eye? Our optometrist said that yes, this can happen. Which may explain why Stella frequently says, “Mommy I need a break!” But, the doctor explained, if I’m around, serving as Stella’s anchor and emotional safety net, it shouldn’t be an issue. For that reason and many others, I am so happy that I get to be with Stella during this time in her life. I get to be there to eat the pretend lunch she prepared and soothe her when her vision acts up (though I never really know for sure) and observe all the little things that indicate what she’s seeing and experiencing–which prove helpful to this process but might otherwise go unnoticed. I see how her peripheral vision is really good now. I see that puzzles are a breeze. I see her push her left lens closer to her eye. I hear her say things about her eyes that give me hope. I’m fortunate to have this time. Happy to take all (okay most) of it in.

Children's Eye Chart

These are the symbols Stella identifies.

These exams were more than just “let’s see how she’s doing” meetings. This latest evaluation, particularly with the developmental optometrist, was a crossroads. I was nervous. I feared Stella would feel my heart pounding as she sat on my lap in the big black exam throne. We came to this point of decision-making because it’s not only been increasingly tough to get cooperation from Stella for vision therapy at home, but also in the office at times. Some exercises are much more well received than others both at home and in the office. Some appointments are simply better than others and I still believe that she gets a lot out of all of them. At home, it can take over an hour to get 20 minutes of therapy done. (I find that time hard to fit in comfortably–but I suspect other, more normal and organizationally proficient moms might do a better job of this so I really don’t want to deter other families who have a child of two and a half who might greatly benefit from vision therapy.) We’ve been told to do the exercises earlier in the day, when Stella is less tired and there is more natural light, because we tended to shove them in at the end of the day. After a glass of wine, I’m a much more effective and relaxed vision therapist. But I am slowly getting better at overcoming my dread of possible screaming and infinite dawdling and learning to break therapy up into small chunks. A quick matching game (with the patch) before lunch. Sticking skewers intro straws while patched and eating dessert. That sort of thing. Did I mention that I’m not very organized? If The Container Store had a blacklist, I’d be on it. Though I do have a big green plastic box in which I dump all of our vision therapy games and tools, which is a true Martha Stewart moment by my standards.

In the end, due to her gains in 3D vision and acuity as witnessed in the optometrist’s office, and even the ophthalmologist’s thumbs up assessment of Stella’s visual status, we’ve decided to continue vision therapy for another few weeks, at least. With an emphasis on use of the yoked prism goggles, which merit an entire post (coming soon), and more physical exercises that engage the vestibular system and body as they relate to and inform vision, from what I gather, helping Stella’s brain devise a more accurate map of space and her place in it. Stella enjoys those activities more, anyway. Bouncing, rolling, running? She’s in! Donning red/green glasses and slowly scanning the kitchen floor for matches, MFBF style? She’s so done with that particular game. She used to get 15 matches in one shot, now I’m lucky to get five reluctant matches worth of cooperation and sometimes she refuses completely and we both end up in tears. So I have to roll with it and be more flexible than ever. Putting those cards on the wall over the couch and letting her bounce around while searching does help make it more novel and fun. But I’m not sure that exercise is worth it anymore. Stella’s vision therapist agrees and is going to move us along to some new MFBF exercises to build upon this work and mix things up. We really like her–she’s had letters thrown at her, cards torn out of her hands, and shrill, blood-curdling screams shatter her eardrums, yet she keeps a cool head at all times. Me? Not so much. I sweat during those appointments to the degree where I stash deodorant in the diaper bag.

So we are at the beginning of a big vision therapy push. Can I help Stella get to the next level? I sure hope so. We’re going to do our best. We’re seeing progress and it would kill me to break now especially with the promise of yoked prism goggles just starting to be a staple in her vision therapy buffet. If a break is needed after that, fine. But if so, we’ll be back at vision therapy as soon as Stella is ready. Do kids become more cooperative at three? Good lord I hope so because caring for a two and a half year old is like playing with fire. I’ll tell you what, though. I appreciate Stella’s strong will (the screaming? less so) and don’t blame her one bit for resisting patching and exercises, the purpose of which she doesn’t comprehend. Between that and patching, we ask a lot of her. She does amazingly well for her age, and knows her numbers, shapes, and letters better than many kids twice as old, which has helped make a lot of exercises possible. As they say where I’m from, she’s wicked smaht. Don’t even get me stahted!

It’s been twenty seconds since I’ve heard, “Mommy? MOMMY!?” So another Stella need will arise now and I must go. But first a shout-out to our comrade Strabby, who recently had a huge vision therapy breakthrough using a lot of the same therapeutic tools that Stella employs. It is so fascinating to hear her account of her first glimpses of “3D-ish” vision–I bet that’s what Stella was experiencing when she said, “I can see with both eyes!” Strabby gives me a better idea of what Stella might be seeing and going through, which helps keep me motivated. Thank you and congratulations, Strabby Sally. Keep it up. Lead the way to 3D-ville, baby! We’re right behind you!

Cirque de Okay

Posted on by amberhj

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

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

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

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

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

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

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

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

Broken glasses, stained clothes, and other infuriating non-issues.

Posted on by amberhj

The other day during breakfast, I asked Stella to name her favorite animal. She sat there for a minute, with her brow furrowed and finger perched on her lips, obviously in deep thought. Stella then perked up and exclaimed, “MEERKATS!” We saw them at The Woodland Park Zoo a couple weeks ago. Honestly, I expected them to look more like rodents, but they were WAY more adorable than that. I remember Stella smiling from ear to ear as she watched the meerkats scurry around in their faux-desert environment. Melted my freezer-burned heart. Anyway, Cody and I were so impressed with her question-answering that we followed up with another query: “Stella, what’s your favorite food?” She immediately replied, “Animals!” Come to think of it, the girl does enjoy bacon and chicken.

It’s amazing to me how someone so cute, small and thoughtful can be so destructive. See, Stella’s first pair of glasses lasted only 18 days. Last night, while riding in the car, she just about tore one of the temples clean off. It’s still attached, but dangling and wonky. Kind of like my sanity, except with that, there’s no warranty.

Know what else is messed up? There are oil stains on every piece of clothing that I own. Pre-treating with dishwashing liquid helps a lot, but it’s hard to get them all out, because oil stains are invisible until you put the garment on to wear for the day. Then they leap from their hiding places, get all up in your face, and yell, “Surprise, chump!” And you’re not thrilled. Upon reflection, the amount of rage these stains have prompted from me is embarrassing. I have thrown tunics across rooms, and yelled angrily about how I have nothing to wear. And I’m 33 years old.

Perhaps my instability is linked to the fact that Stella’s been eating a lot less lately. Yep, when Stella’s appetite wanes to this degree, it still bothers me, even though I know better. When I said my sanity was dangling, I meant it. During the past week, more food has wound up on my clothes than in her mouth. She often refuses to sit in her chair and will only come to the table if she gets to sit in my lap. I’ve had to fight to remain calm–especially when she gets my hopes up by grabbing a fistful of tomato-y, olive-oil laden pasta, only to casually dump it back on her plate and grab me by the front of my shirt for leverage as she repositions herself in order to get down from the table, after eating just about nothing. Maddening. She’s just too busy thinking about meerkats to eat, and who has time for napkins when mom’s new t-shirt is at the ready?

But I’m not all hopeless or anything. Stella’s got a back-up pair of glasses (because I’m a genius). Even better–I haven’t seen Stella’s eyes cross since she got the glasses! Over the past couple weeks, I bought an entire new (summer) wardrobe for Stella and myself. But I’m no fool. At meal times I’m wearing that fun, striped apron I wisely bought a year ago and never used. Which reminds me, Stella happily ate a bit more at breakfast and lunch today–hooray!

Sorry, Cody and Stella. I’ve been a bit down lately. But it looks like we’ll survive. In the heat of a frustrated moment, I forget how good we are at that.