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.

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Dark circles and bright spots

I’m growing ever more concerned about Cody and myself. On Wednesday morning  I had a crying meltdown after driving way up north for an appointment for Stella, which I thought had been squeezed in before preschool that day but was actually squeezed in before OT yesterday. I completely forgot about her 25-minutes-away PT appointment on Monday until I heard my iPhone’s musical reminder, ten minutes prior to the start time. Stella had the meltdown for us that time. Cody accidentally convinced himself and his boss that a work event was today, but it is actually taking place tomorrow. We are exhausted and it appears to be catching up with us.

Like so many parents, we have no childcare support. No family within several states. We have a four-and-a-half-year-old whom we love more than anything but who does not let us sleep for more than four hours straight. Close to five years of severely broken sleep take a toll. (I believe you need six straight hours for a proper sleep cycle?) You can see it under our eyes, and some days, in our shortened patience. Less than ideal, to say the least, when you have a child who requires extra patience, understanding, and planning.

In order to afford musts and, well, luxuries, but also to give me something that is mine and not revolving around my daughter (for her sake and mine), I took a new job. I want to fund Stella’s costly therapies and possible private school and a kitchen that is not held together by duct tape, so I’m working 20 hours a week mostly from home. I hope to make it last, but if this keeps up, I’m not sure I can. We don’t have the affordable, high-quality childcare we need, and I’m not willing to leave her just anywhere–we tried a nearby drop-in preschool for extra work time for me and it didn’t work out very well for Stella. I want to accompany Stella at her weekly appointments (observing and participating when I’m not a distraction for Stella–it depends on the day), work and play with her each day at home, give her time to rest during the day to fend of double vision to the extent possible, and take better care of myself.

So, I’m feeling pretty crappy lately, to be honest. Stella has been more up-and-down as therapy progresses, which is to be expected. But just as she needs more support, our reserves seem to be rapidly depleting. While we feel we are doing our very best,  we have to do better. We have to find support. The truth is I’m scared that Stella’s needs would not be met or that she would be treated unfairly if someone didn’t truly understand the situation, and I’m unsure of what the right childcare for us would even look like. Part of me knows I need to work and have breaks and part of me doesn’t want to leave Stella at all, because I want to give her the extra bear hugs and comfort she needs lately.

Frankly, I’m also dealing with some anger. I feel bad about it but it’s there. The anger is directed at people along the way who have been so dismissive of our concerns, stress, anxiety, and struggles. Who assumed if I just did X-Y-Z (presumably in line with how they parent their children), put distance between myself and Stella (as if I wanted her dependent on me), or just “relaxed” that everything would be fine. Overall we have it pretty good in life, but we have not been dealt a typical parenting hand. This was recently validated in a big way, which was both sad and a relief. What I have learned from all this is that judging other parents is absolute, 100% bullshit. I’ve done it here and there on this blog and I will never do it again.

However, I can step back and think about all the people who have supported me through the journey so far, with playdates, encouraging comments here, and special gifts from family for Stella, which mean a great deal. I get that it’s a two-way street. I have been very consciously extending support to others, lending a hand when I can. It is like magic in terms of improving one’s mindset.

Cody, Stella, and I chipped in with some volunteer work that a friend’s family routinely does at a downtown emergency shelter for homeless mothers and their children. We helped provide and serve dinner, and it gave us some much needed perspective. I was moved by how the people staying there, who must be so terrified and living in absolute limbo, noticed Stella’s difficulty and upset, and reached out to her. Stella listened shyly to a superbly kind pep talk from one woman. We received empathetic smiles and not judgement. On the way out, Stella received a kiss and hug from a four-year-old girl living in the shelter with her mother until they can find placement in a longer-term shelter. I could see that this girl, the same age as Stella, probably had some developmental delays, and clearly, given her family’s situation, was not able to receive multiple therapies to address them and maximize her potential. That sweet girl.

We may not have much support, but we do have a home and employment. We can get Stella the support she needs to overcome her challenges and flourish. Stella’s physical and occupational therapists have noticed some postural improvements in Stella already! She can now do some of her reflex integration exercises herself. We have been able to stock our home with swings and tools and sensory retreats to better meet Stella’s needs. I can also see that warmth and understanding is out there, even in the most unexpected places. There is hope.

In terms of exhaustion and support, I do not expect to solve the whole problem, probably ever. But I can at least find a reliable, warm, thoughtful babysitter for once-in-a-while. We’ll start there.

Spring

I know that our efforts in OT and PT have really just begun, but I swear I already see little buds that will one day burst into blossoms. Slowly, steadily, surely. I see her ever-so-smoothly writing letters on the chalkboard wall with a nice grip. She is sounding out the silly non-words she lays out with her set of wooden Montessori letters. Several times the other day she briefly coasted, lifting up both feet, on her balance bike in a proud first! Snail chases, slithering laps that exhaust me but thrill Stella, have replaced last week’s bear hikes, and so joyfully and so perfectly in terms of fun and therapeutic benefit! So yes, I see positive signs peaking up.

Stella’s daffodil bloomed out front alongside the walkway. So while departing for dance class, I pointed out to her that the flower she planted had finally opened up. Later upon arriving home she stopped, bent over, gently cradled the blossom in her hand–the way you would a toddler’s chin–and quietly said, “Good job, daffodil.” She revealed her sweet nature and my over-reliance on “Good job!” despite knowing better. Regardless, the encouragement is called for. Blooming takes courage, hard work, and plenty of hopeful patience.