glasses

Blogging, Stella's eyes, vision therapy

Look what the cat granddaughter dragged in!

Aside | Posted on by amberhj

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

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

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

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

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

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

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

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

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!

An inevitable dip in the roller-coaster ride

Posted on by amberhj

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.

 

Stella insists she can see with BOTH eyes

Posted on by amberhj

Yesterday was sunny and crisp. A Golden Delicious apple of a day. Okay, a frozen one. I’d recently read about how incredibly important and beneficial outdoor time is to kids’ eyesight, and was determined to whisk Stella off to the neighborhood park immediately after her nap. Stella woke up, and after wasting about 30 to 45 minutes doing absolutely nothing in particular, I removed the eye patch from her glasses and we headed out on foot.

Half a block into our walk, which was really more of a run, Stella seemed to have a revelation. I saw it before she said a word. She suddenly paused, looked around, smiled, and excitedly exclaimed, “I can see with BOTH eyes!” She went on to make this declaration at least twenty times. “Mommy! I can see with BOTH eyes! I can see the leaves. I can see the berries. I can see with BOTH eyes! Mommy! I see with BOTH EYES!” While she was having a great time, seeing with BOTH eyes, my mind raced to interpret this statement in relation to her amblyopia and strabismus and vision therapy. I tried not to let my hopes soar, and simply focused on the happiness of the moment. She was thrilled. I was spellbound and silent, mostly. I did say, “Yes, you CAN! You can see with BOTH eyes.”

What did Stella mean, exactly? It could be clear, simple, and run-of-the-mill. Even with her amblyopia, Stella does see with both eyes–with one more than the other, but still. I see with both eyes, as do most people, obviously. Was she simply making a smart, toddler-esque realization about the world and how it works? Or was a shift taking place in her vision? The whole point of our current vision therapy and patching efforts is to help her see with BOTH eyes, equally. Out of nowhere, she was expressing the essence of everything.

I mentioned the incident to Stella’s vision therapist today, and naturally, she found it very interesting. We both acknowledged that because Stella is two, it’s hard to know why she was saying that she can see with both eyes. But yes. Be still my beating heart! It could be that her eyes are working together better. Binocular fusion and increased stereoscopy (3D vision) could certainly create such an excited and interested reaction. On the other hand, it’s also possible that she’s seeing double–which isn’t necessarily bad. Sometimes kids in vision therapy see double here and there as their brains figure out the path to binocular fusion. But I don’t think that’s it, because she had no trouble grabbing small berries or pebbles, no difficulty running fearlessly up and down the small but steep slope that runs parallel to the sidewalk. She made eye contact with me frequently and purposefully.

When Stella’s eyes crossed severely on that day last April, the day that (thankfully) set us on the path to glasses and patching and vision therapy, she couldn’t see or do much of anything. Eye contact was impossible. She could walk, but not as steadily, and if told to walk to mommy, she’d miss me completely and sail by to my left,  aiming at one of the two inaccurate, fuzzy mommy images that she saw. Her arms flailed in front of her, grasping. She wasn’t scared. She seemed dazed and thoroughly amused, playing around in the blurry void. Nothing of this sort happened yesterday. There was a general feeling of clarity, in the way she spoke and behaved. Regardless of what Stella was actually seeing and experiencing, I view this small but striking incident as positive development. Even if her vision was not being transformed in that moment, it was still wonderful to hear and behold.

Due to a rough night of broken sleep, today’s vision therapy session was challenging. Stella was tired, and her fuse was short. But we did some solid work, and learned some new exercises. During the long-ish drive home, again I noticed something out of the ordinary. I looked back several times to see Stella positively beaming. Smiling such a sweet, powerful grin while gazing at something specific–one time it was the cherries hanging from the rear-view mirror. Stella smiles a lot, but this was different. Focused, for no obvious reason. We were listening to NPR, so I know music wasn’t the spark for her pronounced delight. I think it was her eyes again. Maybe she was seeing double and found it entertaining. Or perhaps she was seeing the world in full depth and dimension. How beautiful that would be.

 

 

 

UW pre-optometry students to the rescue!

Posted on by amberhj

Stella, nailing "The Treat Game" with her assistant, named Baby.

Stella, nailing "The Treat Game" with her assistant, named Baby.

Stella knows how to use “WHAT!?” for comedic effect. At PCC, the natural grocery store we hit up to three times a day, there are fun sculptures outside. In reference to one of them she exclaimed, “A dog on a bike–WHAAAT!?” Just a sliver of a pause inserted. She went ahead and tacked on the prolonged “WHAT!?” in a flat yet exaggerated way, the timing and tone appropriate for SNL or In Living Color. Clearly, she’s a comedic genius bound for stand-up stardom.

As I’ve hinted at before, here and at Little Four Eyes, accomplishing our allotted daily vision therapy is a challenge. A grind. More for me than for Stella. In the way that getting up at 5 AM is challenging for a wine-guzzling nightowl. (I swear that’s not me. Usually.) I’m not the most organizationally proficient mom you’ve ever met–unlike my cousin who organized, within an inch of its life, the kitchen drawer that holds her young daughter’s dishes and utensils. To me it was an awe-inspiring thing of unattainable beauty. Honestly, I’m just happy to have identified a drawer into which I can toss that stuff from across the room, since it’s usually left open. When it comes to what needs doing in daily life, I get it done, but piles, toe-stubbing, sweating, and flat-out sprinting are involved. My creativity helps compensate, though. It kind of makes up for the disarray. I write fabulous copy for a range of clients in order to pay for Stella’s vision therapy and other stuff, and enjoy it, and I easily conjure up ways of executing or adapting vision therapy so that it’s somewhat innovative and actually fun for my two-year-old, who is quite young to be doing vision therapy in the first place. I find this type of work–the creative part of vision therapy, but not necessarily the execution–incredibly motivating and satisfying. Which is only natural, but somehow my difficulty seems much more severe than it should be. Of course, it’s not some horrible Sisyphean nightmare either. I believe in vision therapy. Though I struggle with getting it done, our daily work is incredibly valuable and effective, and Stella is resilient, adaptive and more cooperative than she gets credit for. Oh, and she’s creative, too! Using random objects like bulb syringes and blocks and ribbon, she’ll construct a tall, thin structure with a rounded top and say, “Look, mommy! I made the Space Needle!” And you know what, it really, really looks like the Space Needle. Clearly, she’s a brilliant engineer/designer bound for international renown.

Genius aside, when it comes to vision therapy, it really, really helps that she’s willing to step up to the very hardest challenges for a taste of Theo chocolate, made one neighborhood over from where we live, just down the block from Cody’s workplace and PCC. We often stop in for tastings, pretending to be tourists, though I’m not sure we’ve ever fooled anyone, even with our well-honed Boston accents, since we are loud, include a toddler wearing purple glasses, and head directly to the Hazelnut Crunch every time. In the context of “The Treat Game,” explained in my recent post at Little Four Eyes, she’s now grabbing two cards at at time so as to find matches twice as fast. Those red/green glasses just aren’t posing enough of a challenge anymore. Not when Theo chocolate is on the line. That’s my girl. But I know we can’t rely on chocolate. That’s simply the trick I keep up my sleeve. We have been in need of assistance for a while now.

As opposed to my mental lopsidedness, my sister is organized AND a creative problem solver. When I told her I was thinking of hiring someone to come here a couple times a week and help with our at-home vision therapy, she immediately suggested that I find an optometry student. I was all, “Brilliant!” Because wouldn’t you know it? We live right next to a giant university–WHAAT?!

So I got in touch with an officer in the pre-optometry club at the University of Washington and she kindly put out the word. I’ve received five applications from wonderful young minds! I’ll not only tell them everything I know about vision therapy and provide true insider information on to get Stella’s cooperation, but I’ll also throw in a pot of coffee and some sort of hourly rate. The peace of mind I’ll get, and the likely improvement in Stella’s outcome, will be worth it’s weight in Theo chocolate. Wait. Maybe I should pay my vision therapy assistant in chocolate bars? What can’t that stuff do?

And that’s not all! I’ve got a lead on a fantastic babysitter and zeroed in on a preschool that may just be ideal for Stella, due to its notably bigger focus on physical activity and fitness than any other preschool I’ve learned about. They have gymnasts and professional ballet dancers work with the little ones an hour a day–WHAAAT?!

Feels like we’re on the brink of being on a roll. We might even, after almost two and a half years, get some much-needed support–WHAAAT?!

Honestly, it’s not just Stella’s eyes that need the help. It’s me.

A little blue

Posted on by amberhj

Lafont Tamtam in 220 blue

So long, old 220 blue

Stella’s glasses are blue, mostly. They are also broken. Actually, she has two pairs and both are destroyed. Again.

So we hauled our butts into the optical shop today. Apparently, after breaking them ten or so times, we’ve exhausted their supplier’s inventory of the Lafont Tamtam in 220 blue. To be clear, we used to get the original Tamtam in that hue, then switched to the identical Tamtam 2 in the same shade, a sturdier update. They’re both depleted and being phased out. So I could not order a replacement pair in what has become her signature color.

You know what’s funny? My sadness. My heart broke just a bit when the optician told me it was unavailable. This pang was a tad surprising. Not so long ago, I was teary about her need to wear glasses. Afraid they would obscure her beautiful face. Change her somehow. But at some point between then and now I fell in love those little blue frames. They’ve become a part of her, an essential component of her unique brand of cute. As cheesy as it sounds, those glasses truly hold a special place in my heart. And that explains why, even though they kept breaking, I couldn’t let go.

So I ordered them in blue 315 (which apparently means purple).

Here’s hoping that one of Stella’s New Year’s resolutions is to take better care of her glasses.

Lafont Tamtam in 315 blue

Welcome aboard, 315 "blue"

A crime of passion. A lesson for us all.

Posted on by amberhj

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.

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.