An inevitable dip in the roller-coaster ride

When Stella gets really upset about anything at all, her immediate, go-to move is to tear off her adorable purple glasses with one hand (OUCH!) and throw them, with the force of every ounce of rage she’s got. Though to be fair, in the rare minutes when they are off, she will sometimes ask for them. And objectively speaking? Her specs simply handy during tantrums, as they happen to be the closest toss-able item. My point, I suppose, is that sometimes, despite my obsession with her eyes, it’s not all about vision. Not every fit or glasses-tossing, or vision therapy refusal has to do with her visual system! She’s a toddler, for crying out loud. Today, she’s getting a cold–her nose is running. She could be teething, as she’s complained about her mouth hurting and chewed through several pacifiers (disclaimer: we plan to get rid of them very soon!), too. Any of these things could explain her aversive behavior lately. Mind-boggling mysteries of the toddler mind abound, and I’ll never solve them all. But a pesky fact remains: Vision therapy has gotten tougher. Patching, too. I’m stressed out.

I fully believe in vision therapy, but as of this moment, I’m not 100% sure of our current ability to keep up the regimen with proper diligence. I always wonder if we’re doing enough. Some days–like, oh, TODAY–Stella resists patching and “eye games” like it’s a form of medieval torture. Of course I don’t blame her. If she doesn’t feel like being still or finding matches or attempting whatever task I’m presenting (though I always try to provide two options so she can CHOOSE), why wouldn’t she be annoyed? She doesn’t truly understand why we’re doing all of these exercises every day. It must be confusing and frustrating when I insist that she stick skewers into straws or put on awkwardly large red/green glasses (okay, I’ve taken out the lenses and taped them to her specs instead–am I a rebel or what?) and find matching shapes on weird-though-now-way-too-familiar cards, rather then go to the park, have a tea party, or paint.

To be clear, despite the bumps in the road, I have most often felt certain of Stella’s continued visual improvement. Like when she says, as I reported recently, “I can see with BOTH eyes, mommy!” Or when she does the balance beam, a two-feet high, 4-inch wide one at the playground, all by herself. Or when, early on in her vision therapy journey, she stopped during a walk we’d taken a million times, to feel the rocks that stick out of the concrete beneath our feet–something she’d never done before. We know that she made great strides during her first three months of vision therapy. But we’re well into our second three-month segment and it’s becoming more of a battle. I worry that her increasing lack of cooperation (corresponding with my increasing and decidedly unhelpful frustration) is a worrisome reflection of visual difficulty that should be resolved by now, and/or that this behavior may make real recovery impossible, at least in the short-term.

I’m not giving up. I’m just a bit worn down. The stakes are high. We invest a lot into Stella’s therapy, financially, emotionally and time-wise. The thing is, the stakes don’t need to be this high. They shouldn’t be this high. Vision therapy is supported by decades of evidence and research, and should be more widely embraced. This would take a huge burden off of families like ours, and improve outcomes for children.

I have a lot of anger about health care in this country. By the time Stella’s course of vision therapy is over, we’ll have spent somewhere around $20,000 on much-needed care for sweet Stella that was not covered by insurance. The stress and pressure created by our system does not help Stella, or our family as a whole, thrive. We don’t yet own a house. Our one car is a dented 2003 Ford Focus (tan and blah and not me at all but it works!). I still consider us lucky, but we are definitely and uncomfortably stretched. Outrage takes over when I think about Stella and other children, who by no fault of their own need extra help in order to survive and flourish. What if we couldn’t have used our nest egg to fund $1,000 in hypoallergenic formula each month to help Stella survive as a baby? Maybe they would’ve stepped in when she was seriously ill, having been forced to ingest formula (or breast milk) that was literally killing her. A letter from her pediatrician insisting that Elecare was a medical necessity did nothing. Formula was conveniently “excluded” under our plan. (It’s so abhorrent to me that I’m having a hard time writing about it without becoming extremely emotional.) Now, with vision therapy, not only do we lack support from the health care system but also most doctors. Maybe they’d help us out when Stella failed to learn to read? When she started rejecting school altogether? It’s the signs of progress and Stella’s happy demonstrations of new abilities that keep me going. They’re worth every penny and more! It’s her natural, toddler-appropriate resistance, combined with incredible pressure to see results due to exorbitant costs, that make times like this so hard. My reactions to her lack of cooperation may be overblown, due to the fear created by the situation. Maybe I push her too hard at times, out of desperation, making it all worse.

This is all really honest and dark. I’ll emphasize that on daily basis, we’re doing okay. I really, really try to make the exercises more fun and rewarding. In a forthcoming blog post, I’ll share the little successes I’ve had in that area, and explain the adaptations that have helped with gaining vision therapy cooperation with a two-year-old! No small feat. I totally enjoy devising solutions that make her exercises palatable. When it works and she has fun while doing highly beneficial therapy, I’m incredibly fulfilled and uplifted. It may sound completely insane but the idea of actually BECOMING a vision therapist has crossed my mind. So that I  can work with her long-term, at her pace, at a slightly older age when she is perhaps more able to focus her attention, without driving us into bankruptcy. I’m only half kidding when I say that a vision therapy education probably wouldn’t cost too much more than Stella’s vision therapy itself.

This morning, Stella really resisted patching. Which is what sparked this wave of doubt and prompted me to analyze why I feel so much pressure… why the stress is mounting. But it may have nothing to do with her vision. And my worried questions about Stella’s vision can be addressed to some degree during her weekly in-office sessions, which is immensely helpful. In addition, I’m trying to get help with her at-home therapy, stocking up on chocolate chips (the ultimate, last-ditch incentive for cooperation) and hanging on until her next progress evaluation next month, hoping to get the reassurance we need. Ideally through some sort of computer-based testing rather than reliance on Stella’s ability to call out what she sees during testing. Because LORD help us if she’s teething or tired.

To feel like we’re standing on semi-solid ground–that would be a gift. I know we’ll get there. I do. In the meantime, I hope that in some small way, perhaps just by sharing our story or calling out the lack of support, we can make it easier for those that follow.

 

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About amberhj

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

7 Responses to An inevitable dip in the roller-coaster ride

  1. Mimi says:

    Just know that you are giving it all you have and some days that is more than others just because you are human and so is Stella – you are doing a great job and will continue to do great because you are the Big A!!

    Love,
    Mimi

  2. Jenny says:

    Great post Amber, I too get so pissed about health care and what it hasn’t covered that WILL make Heath independent and less costly to the system. You & Stella are doing so great, and those moments of fulfillment really do make it all worthwhile, huh?

    • amberhj says:

      It’s crazy, isn’t it? The short-term mentality undercuts patients and the system yet it persists. Heath’s progress is incredible and you know as well as anyone that the effort of going beyond the system’s status quo is so worth it. Yes, those moments of fulfillment are magical and keep us going! I look forward to reading about more of those moments on your blog!

  3. Don’t give up on the VT! Now about insurance….it used to be insurance paid at least some of the cost for optometric vision therapy……then insurance just quit reimbursing for it….(you know how much insurance actually likes to pay for anything)…now it is starting to do so once again. There are a wealth of clinical trials showing that vision therapy works…especially for amblyopia and binocular vision dysfunction….have your doc write a letter. I have had a great deal of success lately with helping my patients getting insurance to support the families I work with….also have your employer or whoever is paying for the insurance to help out as well…..good luck!

    • amberhj says:

      Thanks so much for the encouragement. It means a lot! I worry that our pediatrician is of the same mindset as ophthalmologists. He had a brother with amblyopia who patched and from what I gather, that is the only treatment he sees as valid. I will give it a chance, though. I will bring him some studies, make our case, and hopefully he’ll write a letter. If not, we will find a new pediatrician.

      My main worry is the insurance company. As a baby, my daughter required hypoallergenic formula to survive and they didn’t cover it once she’d been weaned from her feeding tube. It was ridiculous. Her doctor wrote a letter urging them to cover it as the formula was a medical necessity. It made no difference! But I have to keep trying! Thanks again for the nudge. I appreciate it!

  4. Kelly Milk says:

    Hello and thank you so much for creating this blog. Stella sounds like an amazing child with a great mother! I happened upon this tonight as I was researching our daughter Victoria’s eye problems. Our ped opth wants us to start atropine drops as opposed to patching because we were not having success keeping it on her. She is 21 months. I wish you all the best!

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