Happy Stella progresses with yoked prism goggles and vision therapy

As spring arrived, Stella turned a corner and found herself in a sunnier place. I’m soaking it up, people.

All of a sudden, she seems more social. Of course she’s still shy in some situations, but lately, nothing really seems out of the ordinary for her age. At the playground last week, she complimented an 24-month-old-ish boy on his jacket, pants and shoes. And just between you and me, they were nothing special so you know she was being extra sweet and friendly. (The kid looked back at her and said, “I’m tall.”) The kicker occurred last night when she collaborated with her best buddy and longstanding weekly playdate on an imaginary meal, using her play kitchen set and some dried beans and dry uncooked pasta. They collaborated for at least half an hour and afterward I offered to fund their start-up catering business. They worked as a true team, such that Cody and I felt totally inadequate by comparison. Seasoning with salt and pepper, providing Cody and me with plates and everything we needed to properly enjoy their feast, blowing on our food so it wasn’t too hot, and more–they were on top of everything and both contributed equally and without conflict. She said, “Okay, dinner’s ready!” inflecting just as I do.  Her friend took the pan out of the oven only to pronounce, “It needs a few more minutes.” No problem! They both went back to adjust the heat, open the oven, season it again, etc. They’ve always gotten along but there is a whole new level of interaction going on now. All around, Stella’s opening up to new people and new situations. Coincidentally, my shoulders are more relaxed. I’m probably more social, and less worried, too.

She’s growing so tall, that some 3T clothing is too short (to be exact without using the much-maligned months method of age accounting, she’s 2 and 2/3). Her language has undergone its own growth spurt, such that her sentences are suddenly more fleshed out and descriptive and specific. Less toddler-ese, more kid-ish. New molars have just broken through. She’s having fun with her new/first babysitter–adjusting to the situation much more quickly and happily than I dared dream. At-home vision therapy has been pretty darn smooth. Without really looking for this, I’ve noticed her new comfort with catching and hitting a balloon from above. Not long ago, she avoided this like H1N1 and now does it on her own, just for kicks. You know, tossing it up as high as she can and then catching or hitting it up there again. I’ve been very impressed and encouraged. Stella is thriving and woven in with her development, I see the benefits of vision therapy.

Up at the office, Alderwood Vision Therapy Center (for the record, we are paying clients and not being paid to promote them–so be cool, be cool), she’s been much more agreeable and engaged. I’m sure her recent developmental gains have something to do with it, but much credit goes to our vision therapist, Bethanie, for suggesting that we move the in-office therapy later in the day. It has made a remarkable difference. Later is so clearly better that we all agreed to cancel our standing morning slot and take whatever later time comes up each week. No later slots are open, so we have to hope for a cancellation. If nothing comes up, they told us to just skip it instead of taking our old time. That should tell you how rocky it was in the morning. What a relief! I felt like cracking open a bottle of Veuve Clicquot then and there, and toasting the end of a decidedly cranky era.

For a few sessions now, Stella’s been wearing the yoked prism goggles for 30+ minutes at a time! Walking across balance beams, making bead necklaces following a pattern, catching and bouncing balls, and jumping on trampolines while identifying letters or colors on a chart. All that and a lot more, while wearing those goggles. It used to be a challenge to get her to wear them for five minutes.

Though, I’ll admit it’s getting a bit trickier. Stella has shown that she likes and will tolerate the goggles in the base down position, so we need to switch things up on her. The goal is for Stella’s brain to learn to adjust to the input from the goggles–regardless of the lenses’ position. Stella will be done with them when, no matter where the lenses are pointed, she’s comfortable and not thrown for a loop. A couple appointments ago, after a long stretch with the lenses base down, Bethanie switched them to be base up. As if we’d flipped a switch, Stella’s whole demeanor and attitude crashed immediately. It upset her deeply. She became a different person! These are difficult moments for both of us. I struggle with them emotionally, but also find large clues about Stella’s vision.

When the goggles are base down, notorious toe-walker Stella walks flat–the stronger the prisms, the more pronounced the effect. Base down, which she so clearly prefers as made obvious by her cheerful demeanor, her peripheral vision is greatly amplified. In one exercise, letter puzzle pieces were scattered all over the office floor. Wearing the base-down goggles, Stella scanned the floor and found letters as they were called out by Bethanie, then placed them in the puzzle. I noticed that Stella was finding letters to her side–without having to look directly at them! With her searching gaze directed in front of her, she identified and found letters off to her side. So subtle, yet incredible.

After Stella’s brain has had time to adjust to the base-down position, Bethanie now switches them to the base-up position, which (at least in my experience trying the goggles on) lifts and tightens the visual field. It limited my peripheral vision. While not upsetting to me, it felt a bit like being in a tunnel. After the change, Stella’s brain is forced to adapt–to figure out for itself how to map out the periphery. This is HARD for Stella. Which is why I’m so proud of the progress she made in only two sessions. The first time Bethanie went from base-down to base-up, as I explained above, Stella completely freaked out and wanted them OFF. She did wear them for a couple of minutes that time, doing a familiar stacking puzzle in a secluded corner. We realized she was averse to being in the open with the base-up lenses, she wanted to be lower to the ground, and near tasks were more tolerable. In essence, she preferred places and activities that felt more secure, to counter the insecure feeling imparted by the base-up goggles. We didn’t push her, and moved on quickly. But those few moments were telling, and there was even some therapeutic benefit derived. Because the next time, her reaction was less explosive. While still showing dislike of the base-up position, she tolerated it longer and walked across the balance beam a few times! This is how vision therapy moves forward, step by step, over layers of small revelations. And in Stella’s case, mouse sticker after flower sticker, like stepping stones in a river of chocolate milk. Yes, completely unpoetic, but for toddlers, tiny rewards hold epic sway. And honestly, Stella earns them.

Speaking of sway (“controlling influence” not “middle school slow dancing”), the lure of marbles is very powerful with Stella right now, and I casually mentioned this to Bethanie. We paint with them, and play all manner of rolling games with them. So during that second base-down to base-up experience, she invited Stella to collect a marble from me on one end of the beam and walk on the beam to the other side and deliver it to a Frisbee Bethanie held, which she would then move so the marbles raced around the edge. Stella did so a few times before bailing and removing the goggles. Again, the time before, Stella wouldn’t go near the balance beam with base-up lenses, and would instead throw herself on the ground and rip off the goggles pronto. I’m going to start taping segments of her therapy and at the end, put together the most inspiring montage since Rocky. I’m taking soundtrack suggestions, so please do chime in.

Because it’s still a challenge, and because the goggles are proving to be powerful and beneficial for Stella, Dr. Torgerson is arranging for a pair of yoked prism goggles for us to check out and use at home. Holla! I’m thrilled. This is going to be good for Stella, as we can take some of the pressure off. She can wear them here and there, as opposed to having all hopes resting on the in-office goggle work. Bethanie and I will work together figure out how to make this process as comfortable yet potent as possible. Hey, so maybe Cooper and Stella aren’t the only dynamic duo in town. Though, Stella is turning out to be one hell of a teammate. She and I may take the collaboratively baked cake, if I do say so myself.

You know, spring is here, but Stella’s been so delightful I hardly noticed.

How vision therapy is saving Stella’s toes, and then some.

The hardest working toes in the business (of running around)

The hardest working toes in the business (of running around)

Stella is a toe-walker.

She’s been tiptoeing around for as long as I can remember. Prancing, really. Her gait has been so bouncy and adorable, so evocative of a little ballerina, that her physical effervescence has charmed even sour onlookers. I’ve been kindling a small flame of worry about her overworked and constantly clenched toes, despite an inner voice that told me to stop looking for trouble where there was none.

Early last year, I met up with Stella’s occupational therapist–the OT who helped Stella overcome her feeding aversion–to check in and discuss ideas for an article about our feeding experiences. I couldn’t help but ask for her expert opinion on Stella’s toe-walking. And just as I’d hoped, she reassured me. She rightly noted that Stella could stand on flat feet, bend her legs and pick something up with ease. Stella walked flat-footed here and there, and when she stood still, it was often on flat feet. Clearly, Stella was not incapable of walking flat-footed. Besides, she was less than 18 months old at that time, and toe-walking is relatively common in such little ones. In my heart and soul, I agreed with this assessment. I mean, really, do we have to make every little kid quirk into a problem to be fixed? It made me angry to think that something so seemingly age-appropriate and  harmless about Stella could be pathologized. Enough with the medicalization of childhood already! As my dad used to bellow, in Braveheart fashion complete with a raised fist before leaving to pick up our Friday night pizza, “Who is with me?!” So I stopped worrying about it. For a while.

Fast forward a few dizzying toddler months. Sail past the great eye-crossing incident of 2010 and whiz by the diagnoses of strabismus/accommodative esotropia, hyeropia, anisometropia and amblyopia. Jump to Stella’s first appointment with her developmental optometrist, Dr. Torgerson (“Dr. T”) of Alderwood Vision Therapy Center. (‘Bout time I named her–we’re very lucky.) Upon meeting Stella, having taken her hand in the waiting room and led her to the exam room, Dr. T noticed that Stella walks on her toes. (Note: Stella’s ophthalmologist never noticed, or at the very least never mentioned, this.) During that consultation, Dr. T placed yoked prism goggles over Stella’s regular specs. Stella’s toe-walking was completely eliminated. She walked flat, instantly. No. Joke. Stella seemed to be looking at everything with new eyes. Dr. T seemed interested but unsurprised and made a note that this was worth exploring. I was still a bit defensive, a bit reluctant. I tried to reason around it. As in, “Well, she was just walking very slowly and cautiously due to the weird distortion of the prisms and that’s probably why she wasn’t as bouncy or tiptoe-y.” Of course, while my focus at that time was beginning a course of vision therapy to address the aforementioned diagnoses, I did at least make a mental note about the prisms’ elimination of her toe-walking. In truth, I pushed it aside, not wanting to create another problem. Not wanting to accept that in addition to her feeding and vision challenges, Stella’s toe-walking was “an issue.”

Turns out that the toe-walking wasn’t so much a seperate issue as an unexpected (to me) extension of her visual one(s). Since that fateful day, Stella has worn the prism goggles many times during vision therapy sessions. After the first time Stella wore them under the guidance of our vision therapist, Bethanie, I was sold on their effect. There was no denying it! I was struck not only by how her gait instantly changed, but also her demeanor. With the yoked prism goggles (the stronger the prism, the more pronounced the effect), she not only walks “flat” but also seems more calm and able to focus. The stronger ones are pretty overwhelming, however, so we’ve scaled back to some less powerful ones with plans to work in the original stronger pair soon. It’s a mind-blowing work in progress, if you will.

Stella's first run with the uber nerd glasses--I mean, yoked prism goggles

Stella's first run with the uber nerd glasses--I mean, yoked prism goggles

In essence, yoked prism goggles help re-wire the brain, forcing it to re-map spatial relations. Every time she wears them, they help her gauge the world more accurately. The repercussions are stunning. This isn’t just addressing Stella’s vision. Changes are happening in her brain, in how she perceives the world and her place in it. And that dramatically affects how she feels and behaves.

When Stella leaves those vision therapy sessions (wherein she wears the prism goggle, of any strength, really), she is more outgoing. She is open. Allow me to explain why that fact is so incredibly huge. I don’t label Stella as shy. I don’t want to presume, at age two, that “shy” is who she is and I don’t want to convince her that it is. But I will say that she is often quite tentative. We do see flashes of wonderful social interaction and friendliness–she’s very attached to her best friend, Cooper–so I know her social self is in there. But most often, she shrinks back under even the friendliest gaze from a stranger, or is daunted by mere proximity to people.

On the playground, Stella’s crowd avoidance is overt. She rarely uses structures if anyone else is there already. If someone playful soul is on or near the slide, instead of waiting for a turn or walking up with the understanding that they’ll be down soon, she avoids it completely. If people step aside and watch her, with a smile and friendly encouragement or quiet patience, she refuses to go down. She’s protective of herself. At music class, when the basket of instruments is placed in the center of the room, every other child in the room just flat-out goes for it. They make a beeline for the basket, and grab what they want, carefree! Stella immediately takes a step or two forward, only to halt as everyone rushes by. She waits for a big opening instead of squeezing in willy-nilly like the rest. Part of me has long wanted to push her into the fray. To tell her that she’s just as entitled and doesn’t have to wait for everyone else to take first pick. I just chime in with lighthearted encouragement, and a hand on her back.

Qualities like patience and shyness seem almost beside the point when I think about her vision, and the effect of the yoked prism goggles. I’m now convinced that such reserved, cautious behavior is due, at least in part, to the effect of her visual field–not just her innate personality. Crowded places (especially new ones) and chaotic situations can be so, so anxiety-producing for Stella. Thankfully, at long last, I now believe I understand why. She has trouble gauging her place in relation to a crowd. Per Dr. T and our vision therapist, Stella’s peripheral vision is likely limited, creating a type of tunnel vision that makes life more stressful. She’s always on guard because she’s learned that objects in her proverbial mirror are closer than they appear. She can’t quite trust her visual system in those situations. How startling that would be! And how draining and frustrating to be startled so often. So she takes extra precautions. Her separation anxiety, viewed through this lens of understanding, makes much more sense to me now. I’m her anchor amid the unfamiliar and unstable.

The same visual issues that cause this sort of defensiveness also give rise to her toe-walking. It’s not so much a problem as a solution Stella has come up with to better orient herself in the world as she perceives it. I get it now–the details may be hazy, but I am starting to understand a bit better how Stella sees, and how it affects her way of being.

Back to those yoked prism goggles! Despite some difficulty in getting her to wear them for extended periods, they seem to somehow relax her, and the results are stunning. After her last vision therapy session, during which the goggles are now a prominent therapeutic fixture, Stella ran out into the waiting room and strode right up to a much older child, looking him in the eye and beaming! I was elated. A few sessions ago, in the waiting area following one of her first (“full-strength”) prism goggle trials in vision therapy, Stella started chatting with another family. The mother was gently encouraging her children to put away the toys, and put on their coats, because “we’re going home.” Stella walked up to her, looked her in the eye and said, “We’re going home too! I’m going home!” She kept engaging them, over and over, as they walked out. They smiled and acknowledged her, probably regarding it as typical little kid behavior, but to me? I had to hold back emotion. On yet another such occasion, in between those two examples, Stella walked into the play area of the waiting room after goggle-clad vision therapy, waltzed up to the small play table which was closely encircled by older and taller children, and she confidently and without hesitation joined them. She nudged right in next to a 6 or 7 year old boy. She looked at him, started talking, and reached for the toys on the small table as the others played as well. She was unphased. I was awed. Deeply heartened. That was Stella, freed! That was Stella, no longer feeling caged in by her vision. Her world had opened up. She seemed lighter, less stressed, and more engaged with everyone around her. She carried an innate sense of security. I want her to feel that secure all the time (hek, I wish I did!), or at least more often. My hope is that continued use of the yoked prism goggles will get her there–in tandem with our other vision therapy efforts.

Already, Stella’s toe-walking is fading away. She isn’t so high up on her toes, and she uses her heels more often when getting around. Also! She used to flap her arms, especially when happy and excited, but we just realized that she hasn’t done that in a long, long time! Bear with me: Based on limited but fascinating reading, I’ve gathered that autistic children and others with tunnel vision (or other related visual issues in which ambient vision and/or depth perception are compromised) use arm flapping and toe-walking in part to help gauge their place in relation to their environment. Stella is not autistic, but there are clear parallels between Stella’s vision challenges, and even her behavior in specific situations, and those of autistic kids. Many of them would greatly benefit (not just visually but socially and emotionally and in all kinds of ways) from vision therapy yet never get exposure to it. Hopefully that’s changing as awareness of vision therapy grows. So much needless suffering could be eliminated or at least significantly reduced. I am the wanna-be Gandhi of vision therapy.

My view of vision therapy has greatly expanded over the months, along with Stella’s vision therapy regimen. At first, back in the dark ages, I viewed this work as the remedy for Stella’s amblyopia and probable accompanying deficit of stereoscopy. Plain and simple, just like the initial exercises: catching balloons, stringing beads onto pipe cleaners, and the like. Now, her exercises are centered around yoked prism goggles and vestibular activities. She’s using her whole body. Her brain is re-configuring the world. This isn’t an effort to “fix Stella’s eyes.” It’s a campaign addressing the myriad of ways her vision affects her physical and psychological wellbeing. And mine. Our stress reverberates between us, and can be overwhelming at times. I try to take a tip from Stella and just step back and be patient as we work through this, but sometimes I fail. It’s okay. We’re both doing the best we can. I get cupcakes for myself too often, but that’s a small and delicious price to pay.

The goal as I now see it? Stella won’t feel the need to tiptoe through life–literally or figuratively.