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.

Advertisements

About amberhj

Mom, writer, worrier. And a stubborn idealist nonetheless.
This entry was posted in Stella's eyes, toddler, vision therapy and tagged , , , , , , , , , , , . Bookmark the permalink.

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

  1. Jessica says:

    Wonderful writing – and simply fascinating!

  2. Paul says:

    Amber,
    You are a wonderful writer. You are helping us be more aware of how hard you and Stella work together. And how wonderfully. Keep up the great work and wonderful love you share with Stella..And Cody..

  3. Krista says:

    You amaze me! I can’t imagine all the challenges you’ve conquered as a first time mom. You are inspiring!

  4. Lynda says:

    Each time I read of Stella’s progress and deliverance from future problems, I get watery eyed with happy tears. You have so nailed her world, and how it is now opening up, and how she is growing to be “no longer feeling caged in by her vision.” I can say this because I have lived in that closed world. May Stella’s toes stretch with her vision!

    Thank you for keeping up the hard work, and for publishing Stella’s wonder-filled story.

  5. Amber,

    You are telling the story of many, many of our patients. Everyday there are little ones, like yours that don’t get the help they need due to the ignorance (not a demeaning term, just a statement of fact) of the medical community. Thank you for your blog.

  6. amberhj says:

    I want to thank everyone so much for reading and commenting. Means a lot to me, and I’m glad to see that this information is getting out to at least a few more people!

  7. Pingback: Vision Therapy Success – Hear It from One Mom | Lynn Hellerstein, Author of See It Say It Do It

  8. Pingback: The Power of Lenses and Prisms: Saving Stella’s Toes « COVD Blog

  9. Robin Benoit says:

    This story about Stella made Jillian cry…and brought tears to my eyes as well. Jillian well understands how her body compensated for her vision problems. I’ve shared a link to your blog from our Jillian’s Story facebook page.

  10. Valerie Barber, OD says:

    Hi Stella’s Mom,
    While I don’t do vision therapy in my office, I do refer pts to other offices for it. I am a mother of two sons, and it’s great to read a mother’s perspective of the vision therapy process, especially w/ a toddler. How wonderful that you found Dr. Torgerson. She’s awesome. I will now pay attention to how the toddler walks into my exam room much more closely thanks for your blogpost. Keep writing. There’s a book called Fixing My Gaze about a woman who achieved stereo vision for the 1st time in her life in her 40’s due to vision therapy that you might like. Carry on!
    Respectfully,
    Val

  11. Great blog! I encourage parents to share their experiences with other parents! I am an optometrist who does vision therapy and I have had many children who toe walk stop instantly the yoked prism goes on! Not only that I frequently see improvement in other areas as well such as attention. I had a parent who would have to scream her child’s name to get her attention and the child was put on antibiotics several times for mild swelling. The next day with the yoked prism glasses, her daughter magicly started responding when her name was called. The mom told me she was amazed and both her and the pediatrician though it was an ear problem. As an eye doctor, I frequently see other areas improve as well!

  12. Pingback: Humanity’s Awakening: Pink toenails on boys and media tantrums are all good | The Life and Times of Stella

  13. Pingback: Happy Stella progresses with yoked prism goggles and vision therapy | The Life and Times of Stella

  14. Pingback: Quick VT note: TLC for Stella’s transitioning toes. | The Life and Times of Stella

  15. Pingback: The Great Peripheral Awakening of 2011 | The Life and Times of Stella

  16. Pingback: New glasses, a new outlook, and a wide open space. | The Life and Times of Stella

  17. Amber, this is an excellent blog that will give not only hope to other parents, but it provides excellent examples of her symptoms, the prism process and her progress. Vision therapy and toe walking appear to be vegetables and fruits – when they are actually just apples and oranges – so very related! Thanks for sharing Stella’s successes with us.

  18. Becky says:

    Thank you for sharing Stella’s achievements! I couldn’t even get through this post without tears of relief, happiness, regret, anticipation – a whole flood of emotions hitting me at at once. My 7 year old daughter’s vision problems have just been discovered and we are eagerly awaiting her prisms to return from the lab.

    Your account of the first visit to Dr. T’s office was so amazingly like our initial visit to our developmental optometrist. My daughter struggles with speech. Dr. Collier asked her to repeat the tongue twister “purple hippopotumus” and she stammered and struggled through the pronunciation. He put the yoked prism googles on her and she spoke with the most precise clarity I have ever heard come from her mouth!

    Kathryn also shares a reserved nature in all of her interactions. It takes her a couple hours to become comfortable at parties or crowded places. I recall her terror at our first visit to Disney World and now understand it. I, too, have always been her anchor. Always beside her to hold her and accept her discomfort. At least I was that. I just wish I knew of the help she needed earlier in her life. But she is getting it now and that’s all that matters!

    • Mom says:

      Dear Becky
      Thank you for all you are doing for Kathryn..
      Seeing Kathryn improving on a regular basis and coming into her own self, is wonderful. Thank you, for your many hours of research, and blogging, to make this transition into Kathryn’s ” New World” exciting, not only for her, but for all of us.
      God Bless!
      Love you
      Mom and Dad

  19. Jenn says:

    My beautiful 15 month old daughter was prescribed glasses last week for what has been confirmed at today’s second opinion appointment as esotropia. I found this entry on your blog this evening when I started my now nightly Google search. My little girl isn’t yet walking, only walking on her toes when assisted. She is very attached to me especially when there are a lot of people around or when we aren’t at home. She expresses anxiety the only way a non-verbal toddler knows how: crying and, in some instances, screaming. Several comments have been made about how spoiled she is and that I shouldn’t let her act like that.
    You’ve opened my eyes. The feeling that my daughter’s whole world is perceived differently because she can’t see correctly doesn’t exactly make me want to throw a party, but knowing there could be an actual problem (and a solution!) other than behavior has definitely changed the game. Thank you for sharing your experiences with Stella and helping other moms like me!

  20. Barbara says:

    What an amazing commentary! I used to work w/ children w/ autism & saw so much of these characteristics. My own son has milder sensory issues but fortunately not autism. He’s beginning vision therapy this week. Thank you for a great read! I will share this in hopes of educating others too! Awesome!

  21. uabkhad says:

    Hi, I have a son who is 3 with atypical autism and always walking on his toes. Could you fill us with progress?

  22. Lindsey says:

    Thank you for posting this. I also have a daughter who has esotropia/stabismus. Funny thing is her name is Estelle. We are curently doing VT but our Dr has never used prisms. Your article was well write and informative. I’ve become intrigued by prisms I think I’ll ask my Dr about them. Thank you for your article.

  23. Jamie Lilley says:

    My son is a toe walker and 2 podiatrists have told us he needs a pretty invasive surgery to fix it. He is any sensry kiddo, and personally, I believe the issue is in his brain and not his feet. I would love to see if prism lenses would help him. How would I find a doctor who does this?

    • amberhj says:

      Hello Jamie! You’ll want to get an appt with a developmental optometrist who does vision therapy (the prisms are used in vision therapy though in some cases prism is added to glasses without vision therapy). Seems very reasonable to investigate vision as a contributor– I would start here and do a search for a doc near you: http://www.covd.org/

      I hope you’ll keep me posted!

  24. I’m so glad I came across your blog. My 16 month old has been tip-toe walking since she first stood up about 3 months ago. So far the pediatricians have all said this is “normal” for her age, which I’m not buying at all. There’s something else going on. My motherly instinct tells me so.
    I’m searching for a developmental optometrist like you found in Seattle. We are 2 hours from Portland Oregon, stuck way out on the west coast near the Washingtion state line, and I doubt we have anything like that here, but I’m going to try!
    Thank you for sharing your daughter’s story.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s