Onward

After weeks of evaluations, we are now in the thick of OT and PT appointments and daily OT and PT work at home, and sensory activities, on top of three types of patching to help fight the double vision Stella experiences. More VT (vision therapy) will come after we finish laying the foundation with OT and PT.

We swing Stella in a blanket hammock each night. We do odd-seeming but clearly very powerful reflex integration exercises. We toss bean bags, and when we miss we re-enact the errant bean bag’s flight and laugh at how it plopped on the side of the coffee table instead of landing in the laundry basket. We become bears, after: setting up a blanket cave, laying fish in a river of blue silk scarves set up across the room, and cuing up gentle river sounds on Spotify. Mama and baby bear take turns hiking to the river, hunting for fish, and then hiking back with fish in mouth. And we put that fish on a party plate because we are fancy bears, with CLASS. And it’s magic because Stella will do bear walks again and again and use flat paws like therapy dictates instead of the fist or twisted finger-tipped paw she naturally prefers. She cooperates with her “exercises” to a much greater extent than I dreamed possible. Much of it is not labeled as exercises. It’s just fun stuff we do that happens to be really beneficial. We are mindful of fitting in lots of silliness and games and stuff that have nothing to do with therapy, too. Because you’re only 4 and a half once, and you better enjoy it. And, okay, Stella’s cooperation followed an extremely rocky start to the new therapy paradigm that resulted in a two-week reward calendar that culminated in a trip to the Disney Store to get the plush toy of her choice. She chose the peas in a pod. How adorable and wholesome is that? I mean honestly.

We are also trying to figure out where Stella will go to school next year. A process that I never imagined would be this complicated and crazy. While her therapy needs and developmental status were being evaluated, all the application deadlines passed. But just in time, I found the perfect school. A private school in our neighborhood with transitional Kindergarten that would be so expensive but so worth it. But will they have a spot for Stella? Will they think she’s ready and are they willing to help support her quirks and current challenges? I don’t know. She goes in to be reviewed this weekend. It’s out of my hands now. If she doesn’t get in, I’ll have to scramble to get on waiting lists. Or something.

I’m pretty stressed out and worried again. I read endlessly about neuroplasticity, which actually helps a lot. Not only with hope for Stella’s binocular vision and associated motor skills but also for better coping and handling of stress on my part. Stella’s brain can change and so can mine. So can yours. Watch this if you don’t believe me. (I just ordered the book: The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science.)

I think we’re doing okay. We are getting most if not all of our daily exercises in every day and we are not battling. We are having some real fun along the way. Not so much with the patching, though. Most days, we have been missing one of the three types of patching. It feels like a bit too much right now–how much can you push a little one before the solution becomes a problem? But we’ll figure it out. Stella’s developmental optometrist is in constant contact with us, proactive about new solutions both short-term and long-term, and very tolerant of my incessant questioning and reporting and occasionally getting upset about it all.

Ah yes, the word of this day is “but.” As in, “This kind of feels impossible BUT we are making it work” or “This is hard and I don’t know how we’ll fit it all in BUT we will find a way” or “I am scared that Stella will hate this activity and we will fail to do what is necessary BUT I have to try” or “I know Kettle Chips aren’t healthy BUT I need them at 9:30pm on a consistent basis.”

We would do anything for Stella. Before these evaluations shed more light on the extent of the issues she faces, we felt our parenting was to blame. We have more complete answers now, and new wind under our sails! The key is a worn out cliche: just take it one day at a time. If I think about a year or two of daily OT, PT and VT exercises, and the reasons behind them, I feel sad, overwhelmed, and discouraged. If I just think about today (or even tomorrow), and what I can do to help now, I come up with creative ideas that work, and wind up feeling buoyed by small successes. Like the above bear scenario, which while a tiny drop in the therapy ocean, felt huge. She hated bear walking, and now she asks to do it again and again. Charlie Sheen, you don’t know what winning is.

My only guilty failing is in giving Stella a piece of hard candy for her nightly reflex integration exercises. It feels wrong, but I was desperate. After discussing with Stella’s occupational therapist and seeing how she worked with Stella, I plan to come up with a special toy for her to hold during nightly stretching and other exercises instead. Preferably something that lights up and features a small keyboard worth of buttons to push and explore. Tips welcome.

My daughter is so resilient. She is a bright spark that nothing can fade. I didn’t think it was possible but I am even more proud of Stella now. And sometimes, of myself too. Go figure.

Advertisements

About amberhj

Mom, writer, worrier. And a stubborn idealist nonetheless.
This entry was posted in Uncategorized and tagged , , , , , , , , , , , . Bookmark the permalink.

7 Responses to Onward

  1. Karen Hidalgo says:

    It is great to hear about how you and Stella are doing! It really does help to understand more about what’s going on. Amanita is on a VT break but will probably resume in a few weeks. OT might be in her future, too, I’m not sure. She will be starting kindergarten too, in the Fall, at our local public school. I have heard great things about our school district and our local elementary school in particular, which is a quarter mile from our house. I hope that Stella gets into the school that you like!

    • amberhj says:

      Thanks so much Karen! Thrilled to hear you’ve found a great local school and so close to home! I would love to hear about how things go if you ever have a moment or urge to share about how VT and/or OT go and what you learn.

  2. Kathleen says:

    Amber, you are such a dedicated and loving parent. I am in awe. It breaks my heart that you felt that your parenting was to blame for some of the challenges Stella has been facing. I wish we didn’t all blame ourselves for our children’s struggles, but I think it’s only natural. We’re about to begin round 2 of speech therapy for our almost-four-year-old. I’m trying not to blame myself and working to keep the toxic cocktail of my own emotions at bay, but it’s hard. It’s so hard to see your child struggle and to keep things in perspective, so I understand at least a bit of how you must be feeling. Anyway, I’m just so impressed at how hard you’re working to help Stella. If the Mother of the Year Award was a real thing, I’d nominate you, Amber!

    • amberhj says:

      I’m sorry you’re having to work through similar feelings of doubt and self-blame! I know how devoted you are to your son and how smart and caring you are and so from this point of view, it just seems crazy that you would feel to blame. As I recall he responded well to that first round and you are so on top of things (which can be exhausting and worrisome, I know). I know you will find the right therapeutic strategies, and ways of finding comfort when toxic feelings strike. I’m with you in spirit!

  3. Lynda Rimke says:

    Back when I was a kid, creative floor time with my parents & brother was a delightful routine. I have fond bonding memories of “Chuckle Belly” and “Yoga Walks” to this day. What was missing is what you know, and that knowledge is empowering Stella in ways my parents and I missed.

    You’ve got yourself a win-win … all down the road: even with imperfect routines and the stress to get it all done in this hurried time, the bonding memories and binocular vision for Stella will come. This feels impossible, BUT hold tight to joy!

    • amberhj says:

      Thanks for sharing this, Lynda! Very sweet and encouraging to hear that you remember those times fondly! I really appreciate the support, too.

  4. Pingback: Spring | The Life and Times of Stella

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