Something Amazing Happened at Disneyland.

(Note: This is not a sponsored post. I don’t get near enough traffic to attract Disney’s attention.)

In May, after our first three months of OT and PT with Stella, we splurged on a trip to Disneyland. We’d been worrying and agonizing about new realizations and a new path for Stella. We’d been working hard, with some really tough days, getting into a new rhythm with daily therapy at home. We needed to have some fun. We wanted to get away. We thought Stella deserved an enormous treat. So, shockingly, we did something about it. We up and went to Disneyland.

We stayed at the Disneyland Hotel, with watersides and pools for Stella, and an enchanted tiki bar for us. An excellent choice. I shelled out a little extra for a room on one of the highest floors. I was not paying for fanciness. I was paying for pure elevation. During a wedding-related hotel stay a couple years prior in Minneapolis, we were perched in a room on the 20th floor or so. I was struck by how deeply Stella enjoyed sitting on the wide, welcoming window sill and gazing out at the city. Her eyes scanned and rested, scanned and rested, and she took it all in. She enjoyed telling us about everything going on below. The hustle and bustle could be comfortably observed from above. I wanted to give her that chance again, this time with a view of palm trees and pools and the hotel grounds. She loved the view, even laughing at kids’ funny antics in the pool way down below, and the ability to see and know what could be explored. A very sound investment, if you ask me.

We are probably one of the only families in Disneyland visitor history to actively avoid interactions with Disney characters. We saw people waiting in very long lines for a picture with Minnie. Yet, when she approached our table at Goofy’s Kitchen, dread engulfed our table and we were tempted to pull down the proverbial drapes and pretend we weren’t home. Stella wouldn’t look her way, but gave her a no-look high-five. I chatted with Minnie for a moment, exaggeratively extolling her virtues and pointing out how kind and gentle she was, then she was off to the next table, and we exhaled. I know that Stella loves Minnie, but it was too much to be on the spot and face to face. One day she’ll have the confidence to tell Santa what she wants for Christmas and perhaps interact with, or at least not be afraid of, Disney characters. She’ll do that when she is ready. She loved the parades and waved to all the characters–again, from a distance that felt manageable, from the point of view of a spectator.

There are a million anecdotes I could share, but what stands out most about the trip is one ride, and Stella’s dramatic response to it.

I didn’t expect Stella to like this ride, which involves wearing 3D glasses, spinning through space in a way that feels unpredictable, and shooting at constantly moving targets. Because it’s a total sensory bombardment, and because we (foolishly) attempted a 3D movie not long before, and she lasted 15 minutes before we just had to leave with a very distraught Stella. But she absolutely loved Midway Mania. And for her, it was vision therapy.

Why did this ride work for her? She was engaged and motivated. She loves Toy Story, she loved the “game” aspect of it, she loved seeing beloved characters who seemed to be responding to her and cheering her on, she loved feeling like she could do it herself and, I suppose, be instantly rewarded by congratulations from her favorite characters and video-game-esque sounds and scores.

After the initial shock wore off and we realized that, seemingly against all odds, she really loved this ride, we went on Midway Mania at least eight times. Which to us was a whole lot. I often had to carry her in line, but it didn’t matter. When she expressed interest in going on that ride, we made it happen. We were shocked that she could do it and wanted to do it. Not only that, but her scores improved with each successive ride. The mere fact that she could tolerate the glasses, see in 3D, and play this fast-moving interactive game at all was beyond highly encouraging, but we didn’t really let ourselves wonder what it meant for her vision. We were thrilled that she was having so much fun with it. We followed her lead.

Then, for one fabulous week after this vacation and its highly entertaining form of vision therapy, I saw (temporarily–again, just for one week) astounding residual effects. Not bad for a grand total of 50 minutes (maximum) spent on a ride. For example, Stella had previously avoided talking to our neighbors, almost completely. And we’ve lived here in this house and neighborhood for a year and a half. A day or two after our return from Disneyland, while standing in our backyard, she talked to our neighbor for about 45 minutes. On her own. Cody and I were inside, watching from the kitchen, incredulous, watching the clock and marveling at what was unfolding. Later, the neighbor told me that Stella filled her in about every aspect of Disneyland, what flowers we were growing in our yard, and more. The neighbor postponed dinner and hung in there with her for so long–they knew how big this conversation was. We all did. At school that week, Stella’s teacher remarked on how well-rested Stella seemed, how she was not getting frustrated like she used to. Her occupational therapist noticed (without our prompting or telling her about the ride or any changes we’d noticed) that Stella seemed more regulated, and more aware of and interested in people, noises, and activities around us. It’s not that Stella doesn’t notice anything usually. She does! She hears everything, for starters. But she just doesn’t always slow down, remark on, and engage us about them. She just seemed more in tune with a bigger share of the world around her.

As Stella’s developmental optometrist explained it amid a much longer and more helpful description, so much of Stella’s mental energy goes into a conscious effort to simply keep her eyes straight. Interpreting and reacting quickly and gracefully to the world around you–especially the unexpected–can be extraordinarily difficult when it takes a large share of your inner resources to simply “see!” We believe that for that brief window after Disneyland, this was no longer the case. When her eyes were better coordinated without requiring strenuous effort, her world opened up because she could relax and take it in. It was a truly beautiful sight, and I’d seen flickers of it before, when Stella did vision therapy two years ago.

And so, two weeks ago, Stella began vision therapy again. For months leading up to now, we’ve been focused on building the foundation upon which vision rests, and that includes basic motor skills, sensory integration, and postural and primitive and reflexes. That work is ongoing alongside vision therapy. Yes, another crazy ride. We’re working hard to give Stella a better view of the world, but it’s more than that. We’re working to empower her to comfortably and confidently engage with the world, and without the urgent need to keep so much of it at a safe distance.

IMG_3691

Advertisements

About amberhj

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

13 Responses to Something Amazing Happened at Disneyland.

  1. Karen Hidalgo says:

    That is all so amazing Amber. It sounds like huge developments in Stella’s vision and brain! We have taken Amanita to a few 3d movies. She doesn’t like the volume or the scary scenes. I don’t think she sees them in 3d. I think she is alternating eyes and sees flat. The experience you describe about the interactive 3d game/ride made me remember something I read about vision and motion. It might have been from the book, The brain that changes itself. It was saying that for vision to develop completely, the body needs to be in motion. Thanks for sharing!

    • amberhj says:

      Hi Karen, thank you so much. Stella can do this–that’s what Disney reminded me. I’m impressed that Amanita makes it through the movies despite not being able to see them in 3D. Stella just couldn’t tolerate it and got very upset–and it was a movie she’d already seen many times! So funny you mention that book–I have it and am halfway through… will need to revisit and finish… you’re right, it really is so applicable to VT. Thanks for your comment!

  2. Thank you for your post! And such perfect timing…we are anticipating our next trip to Disney the first week in August. Your post made me realize that this will be sweet Kathryn’s first visit since discovering her vision and sensory problems. Your anecdotes made me recall all the terrifying sights and sounds she had to endure in the past (we made it through the scary and, in true Kathryn fashion, her Disney memories are some of her fondest). I’m excited to see how this visit two and a half years later will compare to our other 3 visits.

    I missed so many indicators during those visits: hovering in fright and clinging to me in terror at the mere presence of a character (face characters were OK). Now understanding what she saw– the appearance of a multi- headed large character attempting to hug or high 5 you would be frightening. And then the 3-D movies where she would cower in the crook of my neck and cover her ears against the sound. Happily, she now lives in a multidimensional world and has pleasantly experienced 3-D. Her first visit at 2 years old we attended a Halloween dance party complete with pulsating lights, loud dance music, and the dreaded characters. She clung to me as if her life depended on it. And just as your daughter experienced break throughs as a result of experiencing Disney magic, ours came that year at the conclusion of Fantasmic. At 2 years 9 months she was very limited in verbal communication but she clearly communicated to her dad “Me and Mickey got the bad guys!”

    Since our last visit her strabismus and resulting amblyopia have been corrected with her magic prism lenses. We continue to work on integrating her primitive reflexes, building her core strength, working her auditory and visual systems, and continuing schooling over the summer. It is such a comfort to know that there are other parents, like me, who tirelessly devote so much to improve their child’s livelihood. You are making a difference in her life and I understand your motivation. There is no choice about it…it must be done. I’m so pleased Stella is embarking on the next level of understanding. I wish you many more moments of success!

    • amberhj says:

      Wow, you’ll be in Disney so soon! Excitement! We are already counting down the days to our next trip. Stella’s optometrist helped us understand the effect of the ride on Stella and said “You’ll have to go back!” So now Stella keeps saying, “Dr. T says we have to go back to Disneyland!” Major points scored by Dr. T in Stella’s eyes. Kathryn sounds very resilient, and she has come so far! Disney really has magic and I hope to read about your trip–I bet it will be incredible, so let me know if you post something about it!

      I absolutely know the type of clinging you mentioned. I’m so heartened and impressed by your daughter’s progress, and by your dedicated efforts as well. We are on a mission and nothing will stop us! Looking forward to hearing of more successes, big and small, from you and your girl (prisms really are a miracle when used properly–I’m in awe).

  3. I’m a vision skills specialist in Arizona, and I thoroughly enjoyed this post! I’ve been following Stella’s progress via your blog entries, and am delighted to hear of her progress with her visual skills. What an exciting time for your family!

    • amberhj says:

      Jennifer, thanks for taking an interest in Stella’s journey. I will keep you posted–we are totally determined and I know she can do this. She’s shown us–we just need to stick to it. Luckily, many of the exercises we’re doing now, she really enjoys. I hope we can keep it that way for the most part! Thanks again.

  4. gailcornwall says:

    Sooooooo when do you move to Anaheim? 😉

    • amberhj says:

      As soon as insurance approves our moving costs! Ha. Honestly, don’t think I haven’t considered it… 😉

  5. jannajennings says:

    Found your blog via Facebook. Love it! I wish I had blogged Zach’s journey as if happened, but I think I was so overwhelmed at the time I had no room for anything else. Hang in there. It gets better. Zach is 10. 6 months ago he explained to me that he used to see in 2D but now he sees in 3D. It took him over a year to process all he had been through and find the words to explain it. I had no idea he had been unable to see in 3D. I wish we had begun when he was 4 1/2, but he was 7 when he started VT, which he did for 8 months. You only see clues to the changes brought by her therapy by watching her behavior, but there is likely much more going on in her brain than you realize. I know how hard it is to rearrange everything so you can do daily therapy with your child. We have done it too. i have had to let friendships lapse when it was clear the friend did not understand why I sometimes canceled at the last minute. You are an amazing mom for sacrificing so much for this, and you won’t regret it. Stella is a very lucky little girl that she was born to you.

  6. jannajennings says:

    I just found your blog and love it! Stella is very lucky to have you as a mom.

    I wish I had blogged my family’s experiences as my son, Zach, went through vision therapy. He started at 7 and did vt for 8 months. One day, more than a year after vt was over, he explained to me how he used to see in 2D but now he sees in 3D. I will come for Stella too. Maybe it already is. He explained to me that it was a gradual process for him. He is very farsighted and has convergence excess. He said he could see things far away in 3D, but things close up were flat (because his eyes would cross and he would see double, so his brain would suppress one eye). “The things far away only popped out a little. They started popping out farther and farther, and the popping out stuff started getting closer and closer, until now everything pops out really big.” As he went through therapy, I watched behavior and asked questions, but I never fully understood until that conversation.

    Hang in there. It WILL get better. The enormous daily sacrifices you are making will pay off. You are an awesome mom!

  7. Debbie Feely says:

    Love this! A friend shared your blog. Blessings in the journey.

  8. Kathleen says:

    Amber, this is great news! Very exciting to have such an unexpected breakthrough. Keep up the good work, Mama!

  9. tsubasa1983 says:

    Hi noticed you haven’t posted any updates recently. Just curious how is Stella’s progress?

    My 2 year old Daughter has been diagnosed with intermittent exotropia recently. The opathalmologist suggested we do 2 hours Everyday for 4 months before she reviews again.

    I’m curious if patching works at all. Have researched intensively on vision therapy as well. But still doubt if it’s truly useful. And surgery would be the ultimate last resort.

    I wonder how’s Stella now. Has vision therapy fixed her esotropia?

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