Part III in the sage of Joey's vision development. Once the drama of cataract
surgery and the
early days of recovery passed, we got on with the business of amblyopia therapy. We were charged with 6-8 hours of daily patch therapy, in the hopes of improving her brain's willingness to read the signals from her amblyopic, 20/400 vision eye.
That business isn't an easy one to be in.
An average preschooler, if given the choice between being able to see well or poorly, will choose sight. A preschooler, given the ability to remove an impediment to vision, will avail herself of the opportunity to do so, and will resist all attempts to reinstate the impaired state. And her mother, under dire orders to enforce vision impairment for 6-8 hours of each of her darling preschooler's days, will sink slowly into madness in the effort.
"We just have to get creative," says the mom in
My Travelin' Eye, a favorite children's book about amblyopia. And so we did.
Five (Maybe Not So) Dumb Things I've Done to Get My Daughter to Wear an Eye Patch
1. Enlist the Help of Friends
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| Joey wearing her favorite of all of our "friend patches." |
Okay, so this is probably the least dumb of all of the things I've done. While Joey was still healing from surgery, I send packets of patches to family and friends and asked them to decorate them for her. They mailed them back to us for Joey to wear, often with very kind notes. We received the most amazing, creative, beautiful, bizarre sets of patches we could have imagined. They delighted her, and Bret and I "felt the love" through these patches as we struggled in those early days.
2. Make a Scrapbook
"Crafty" is definitely not a word one would find on my elementary school "describe yourself with words using each of the letters of your own name" activities. At three years old, Joey had better instincts for crafting possibilities than I do. But here we were, with dozens of lovingly created patches by all of our friends, and nothing to do with them after their use. So, we put together a book in which she could place each patch next to a picture of the person who made it for her. As a specimen of the art of scrapbooking, it's pretty s-crappy, but even now, two years later, she loves to look through the pages and see the patches and the friends and family who made them for her.
3. Wear a Patch Myself
Living with very young children is like trying to breath with your head sticking out the window of a car on a freeway. If you concentrate, center yourself, and imagine success, you can do it, but one moment of inattention to the whipping of the wind and your eyes go bleary and your hair is a mess and you end up with a bug up your nose. And that's on a normal day. Add hours of therapy for as long as is possible, and let the gasping begin. It takes so little to throw us off the road--a drippy nose, travel, or just one of those bad days that 4-year-olds have--and the result is, more often than not, less than adequate. Each time we are forced to take a hiatus of a week or two, starting again is like starting over, and starting over requires new gimmicks, new games, and new distractions to make therapy happen.
At just one of these times, I decided to patch with Joey on days when I could. Much like shaving one's head to show solidarity with a loved one going through chemo, I hoped to show my solidarity and make her feel less alone during patch time. I'm pretty sure I did neither of these things, but there were lessons for me to learn from the experience.
From patching with Joey, I learned, as much as would be possible, what it is like to try to function with the use of just one eye. Not surprisingly, for someone not accustomed, it is incredibly difficult. I'm already a pretty clumsy person, but the loss of peripheral vision and stereo vision made many important tasks--measuring, pouring, stirring, moving dinner from pan to plate--downright hazardous, if not plain foolish. What I did not expect to learn was how tiring it was. Not after a few hours, but mere minutes after putting on the patch, my body would simply shut down.....I was physically exhausted, almost paralyzed. We had often seen the same reaction in her, but chalked it up to the struggle just to get the patch on and to general preschooler resistance. But I suffered from the same fatigue, some kind of psychological protectionism of the body, each time I put the patch on. Since my stint of patching with Joey, I've been much more sympathetic about the times when I ask her to patch, and I consider more carefully what other demands we will also be placing on her during those times.
4. Decorate with Patches
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| What? It's butterflies, and flowers, and grass.... |
Despite my crippled inner artist, being crafty seems like the only inroad with Joey and her patches. (In fact, in almost all matters is this true with Joey.) And so back to the craft store we went for yet another therapy re-boot. I had heard of parents who drew elaborate murals for their daughters, life-size princesses for which the patches were the ruffles on their skirts....I could match none of these things, and my effort at creating a picture with patches was pretty pathetic indeed.
One thing I do have going for me, however, is that I am a teacher, and as such unabashed in my willingness to teach something with everything I do. Joey loves numbers, and so we made up some counting pages, using the patches as our units of measure.
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| What's wrong with this picture? Joey knows; she did it herself, "because it's fun that way." |
These two projects exhausted my capacity for creativity. Luckily for me, you can buy art. Maybe not Picasso, but art good enough to put patches all over. I will be forever grateful to the folks at
Ortopad,
who saved me from my nightmares of 8th grade crafts class and had the
genius to make a drawing intended to be filled in with eye patches. Which leads us to #5.
5. Reward a Child Who Does Not Yet Understand Rewards; and then Reward a Child Who Does Understand Rewards
The problem with rewards for young children is that it presupposes an understanding of cause and effect, of delayed gratification, of a willingness, not just to do,
sometime, something that might, some day, earn you something cool; but to do,
right now, something you deeply dislike on the not-yet-often-tested promise that, someday, you'll get something cool. These skills are paper-clip-chain strong in a 4-year-old, and just as likely to stand up to daily use. Both of my kids have proven late-bloomers when it comes to being willing to suffer in the "now" for the benefit of the "later." And yet we persist with stickers and charts and every bit of such nonsense, often long before our kids were ready for them.
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| Ortopad makes great patches, too, cute, effective, and, most importantly, with glitter. |
It has been an interesting exercise. When we started the chart above, three or four months ago, Joey had very little grasp of the reward element, and while she was content to put the patch on the chart after we had (in some other way) convinced her to wear it, she would be somewhat dumbfounded when she reached the "10" or "20" mark and she got a prize. The prize was always welcome, of course, but in those early days it was clear that the cause and effect connections were absent.
She completed this chart yesterday, and by those last few patches she knew what it meant each day to wear one; she knew that she was one step closer to the final goal, and she was, at least some days, willing to overcome her own natural resistance for the purpose of that goal. I'd be proud if I didn't know that nothing that I have done has had anything to do with her reaching that developmental milestone, but it is still pretty cool to watch it develop over time.
Of course, having a child who understands rewards means having a child who understands that rewards should be something
she wants, and not necessarily something that Mom wants her to have, and so we are now proud owners of this fine piece of gender-stereotyping commercialism, the
My Little Pony Royal Castle Playset. On the list of dumb things I've done to get my daughter to wear a patch, this borders on deserving to be #1.
UPDATE:
I am mostly catching up in time in these posts, but there have been recent developments. Sadly, Joey's cataract has begun growing again (or never continued to stop), enough that she sees spots of darkness in certain kinds of light. (True to form, Joey describes these shapes in an almost daily rotation of creatures: teddy bear, penguin, tarantula....Most recently it has been a fish. It is a blessing that she is not at all disturbed by these visual companions.) Because her own lens has mostly been removed and replaced with a plastic one, these shadows are likely to remain at the periphery of her vision and, hopefully, will not impede any development.
In fact, her vision improved this last visit, startling both me and her doctor when she correctly identified the letter one size smaller than the "big E" on the eye chart. Her vision in her amblyopic eye now stands at 20/300. That's a long way from regular sight, and still isn't correctable with glasses, but given that we thought progress was, quite possibly, impossible, it was heartening news.
In addition, we are somewhat optimistic about some new research in vision therapy. I'll share some of what we have learned in the next post, which will also feature...kittens!
In the lab, Joey has charmed the grad students who attend her, and she enjoys barking orders at her gaming buddies and insisting on their aid. Being asked to perform successfully in visual tasks while nearly blind, however, creates plenty of opportunity for frustration; some days our sessions are challenging for her, frustrating for me, and truly the worst part of our day. On occasion, they end in dramatic chair slumping and interesting hairdos brought on by repeated removal of the strapped-on glasses.
