Truthfully, after over a year of effort, this is a huge milestone for us!
The premise? We’re all struggling with the unbearable weight of issues that society just can’t seem to solve—while finding chronically missing phones, making infinity dinners, and replying to inane work emails. So how do we deal? With some colorful and transparent commentary from me and my co-host, Dara, and helpful insights from occasional guestsperts.
Readers of this blog know what my daughter and I went through when she was little, from her tube feeding and vision challenges, to our journey to understanding that we are both neurodivergent (ADHD for me, autism and ADHD for her). I fully believe that those difficult experiences informed who I am today, giving me strength and perspective I would not otherwise have. All of that comes through in the podcast, along with gem after gem from my dear friend Dara, who brings a unique backstory, outlook, and wisdom, especially having grown up as a brown girl in our white hometown. Special thanks to the amazing Amanda Zorzi for our amazing intro music and to the ever patient David Santos for editing the podcast.
Dedicated to moms everywhere and all those who work so hard to make holidays bright for everyone else. (Kid version below.)
Mom was up late as usual. Her focused face and under-eye bags had a blue cast in the festive glow of her laptop, by then the only source of light in the house. She was Christmas shopping online, wine in hand, sleep nowhere in sight when she heard a strange sound coming from the kitchen. Kind of a twinkling.
Everyone else was blissfully asleep and unaware, as usual. Figuring the cat was up to something, she reluctantly got up to investigate.
In the open silverware drawer lay Tiny, their shelf-hopping elf. “How the hell did you get in here?” she wondered. Mom had planned to move him before bed but had yet to come up with another brilliant idea for his god damned charming antics.
As she reached to grab him and close the drawer, he hopped up and said, “Why hello!”
“What the fuck!” screamed Mom. Her heart did a backflip and she nearly did too, stumbling and scrambling in fluffy slippers with no traction at all. Then she stepped on her robe and fell on her ass.
She looked up and saw Tiny’s spry hat and alarmingly alert eyes–the top half of his permanently smiling face–peering down at her from behind the drawer front. “Mom?” he said timidly. “It’s just me, Tiny.”
Mom looked at the wine bottle on the counter, then back at Tiny.
“This is not happening,” she said, standing up and straightening her robe. “And I’m not your Mom.”
“Okay, Mom” said Tiny. “I understand. It’s not easy making the holidays so magical for everyone.” He rolled his eyes dramatically, waving his skinny felt arm as if casting a spell.
Mom tilted her head to the side and narrowed her eyes. The way she does when considering a consequence for someone’s actions.
“I mean, he’s right,” she thought to herself. Then shook her head.
“That’s why I’ve been wanting to talk to you,” said Tiny as he hopped out of the drawer, using a spoon as a ramp, and onto the counter.
At this point, Mom was too stunned to say anything. She was having a dream. That was the only explanation.
“You’ve been doing too much, Mom” said Tiny. “I’m concerned about you.”
“Ha!” A loud, sharp laugh cut through the midnight air. Mom couldn’t help it. This was just too ridiculous.
“I’m serious, Mom,” he continued. “Take it from me. I’m supposed to ‘report’ on your kids like some creepy spy. News flash: No one gives a sugarplum!”
“Are you my subconscious?” Mom asked, half serious.
“Nah, I just get it,” said Tiny. “Here’s the thing. My gig? Not so hard. Let me take it on. I’m not going to be taking Skittles baths or parachuting from chandeliers, but I’ll move around and make it fun for the kids. Don’t worry about me–you’ve got enough going on.”
More guffaws. “My main source of support comes from… a doll!” snorted Mom, now laughing hysterically. Once she started, it was hard to stop.
Over her punchy giggling, Tiny exclaimed, “There you go! You deserve some fun, too, you know.”
Catching her breath, Mom said with feigned enthusiasm, “Oh yeah, great, let’s do it.”
She paused, suddenly serious. “Just don’t forget or I’ll never hear the end of it.”
“Okay, deal! Now go get some shut-eye, Mom. Being exhausted isn’t very merry.”
“You know what? I will. Clearly, I need the sleep,” she said. “But first, I have a question: Why do you keep calling me Mom?”
“Isn’t that your name?” Tiny asked.
She headed over to the couch to shut down her computer, then shuffled back to the kitchen to dump the rest of her wine in the sink. As she turned off lights before finally going upstairs to bed, Mom realized Tiny had disappeared. “Good, the hallucination is over,” she thought.
A few hours later, Mom hit snooze on a screeching alarm. The kids rushed in and jumped onto the bed. “Mom! Dad! We can’t find Tiny!”
Mom and Dad exchanged looks. Her wide eyes communicated, “Oh shit, I forgot again.” She felt a pang of guilt.
“Well, keep looking,” said Dad. “You know how sneaky elves can be!” And the kids ran off.
“That ought to buy us another snooze,” he said. “They’ll get over it.”
Despite another thirty whole seconds of searching, the kids could not find Tiny. Which was peculiar, since Mom had not moved him. But the cat could always be blamed, probably accurately, if needed.
After breakfast and as if preparing for a sojourn in the Arctic, the kids began putting on their boots, puffy coats, mittens, and over-sized backpacks full of snacks and half-assed homework, before heading out to the bus stop. There had been a couple inches of snow and the world looked more wonderful, less brown.
Then they saw him. “Tiny!” The kids rushed over to Mom’s purse by the door, where Tiny’s pointy red hat could be seen peeking out.
They pulled Tiny out and discovered a sticky note on his hand. In almost microscopic handwriting, it read, “Help Mom, or you’re on the naughty list PERMANENTLY!” It was signed with a smiley face followed by “Tiny.”
“Whoa,” said the kids, and Dad in unison.
After they blew out the door like a human tornado, Dad turned to Mom in the oddly sudden quiet. He said, “I get the message. And you’re right. I’m going to do more to help out, especially for Christmas.”
Mom tilted her head and narrowed her eyes. “Right,” she said, knowing full well she had not written the threatening, miniature note.
“I’ll order some gifts to start. I mean it,” he said, then went to make coffee.
Mom turned to Tiny, who’d been left laying haphazardly on the bench in the entry.
She could swear she saw him wink.
Kid version: My nephew’s birthday falls very close to Christmas, a holiday he loves. And he was very excited about this story, as it centers on his own household’s “elf on the shelf” named Tiny. So I customized my original kid-friendly version of this story just for him, and he loved it! He’s a wonderful boy, an admirable big brother, and a remarkable handball player (in addition to other sports). Here it is, in case it could be of fun or use to anyone else. By the way, based on this success, demand is soaring. I’ve promised custom stories to my other nephews and my daughter Stella!
(Note: Remaining holiday stories can be found here as they are released each day through 12/24, and available ever after.)
This story is dedicated to Erin, Sylvia, Rocio, and Hatice.
At 31, I was the neurodivergent mother of a neurodivergent baby. But I didn’t know that. Not about my daughter and not about me.
She nursed just as the books say a baby should, for about a week. Then she battled. The breast, the bottle, me.
My sanity frayed because I knew there was a problem that no one else could see.
I craved empathy like a drug addict in withdrawal. I searched day and night and found it nowhere. Not even for sale. Therapists, several lactation consultants, a postpartum doula for Seattle rockstars—we couldn’t have afforded her anyway—seemed to serve only judgment. So that’s all I ate.
We both starved.
Sick with anxiety, I lost 30 pounds in the first two months of my daughter’s life. I tried drinking olive oil. Straight up. Part calorie loading, part penance. I gagged and spit it up. Just like my baby when I tried to feed her.
It felt as though a lifetime of not-quite-rightness manifested in an inability to feed my own baby. In the early days, when not alone, I faced doubting doctors, and well-meaning but dismissive or outright annoyed others.
I became a mom not when I gave birth to my daughter, but when I pushed through to the other side of despair, for her.
Part 1: The Tube
Stella was born in August. Four months later, baby’s first Christmas was different than I expected.
Stella’s cheeks were red and raw due to frequent attaching and removal of various medical tapes. I tried different types, hoping to secure her nasogastric feeding tube to her face while inflicting the least possible amount of dermatological and psychological damage.
Meals were not bonding moments. They were medicalized ordeals. Picture, if you will, a portable pump. Like an old school gaming system with a few buttons and a digital read out–but you only win if you can stop playing.
Along with the pump there were large syringes for gravity feeds, plastic IV-style bags that connected to the pump and smelled like new shower curtains, and hypoallergenic formula that soured quickly.
The nasogastric tube went down Stella’s throat and into her stomach. When I tube-fed her, I felt more like a surgeon than a mother. Before each tube feeding began, I used a stethoscope to listen as I sent a puff of air, from an empty syringe, down the tube. A telltale popping sound would indicate that the tube was in her stomach. Rather than a lung.
Then it was time to hook up the tube and run the pump. I’d monitor Stella carefully for any gagging or gurgling.
Mishaps were common. Sources of trauma. Stomach contents would come up and out of the tube. Blood would surround the tube in Stella’s little nostril. The pump would malfunction and feedings would need to be started all over again.
The worst of the worst parts was that the tube would come out regularly. It’s astonishing to me, in hindsight, that the emergency room was the only available source of help. Not only were these constant hospital visits expensive, they were time-consuming, exhausting, and traumatizing for my daughter.
After all the waiting, tiny Stella would lay on a hard bed in the harsh light of an exam room. With masked strangers hovering over and holding her down, the tube would be replaced while she screamed. The kind of scream that alerts a mother’s brain to a threat to life and limb.
The tube would then come out again the next day, maybe the day after.
So I learned how to put the tube in myself. This process requires planning and calm. First, you lubricate the tube, then you force it down the throat, somehow hold it in place with one hand while making sure baby doesn’t grab or pull the tube and also taping the end of the tube to baby’s face with the other. Finally, you check the tube’s placement with the stethoscope and puff of air and popping sound.
During one replacement effort, my nerves and her screams caused the tube to go in her nose and out her mouth. A little jolt of horror. I tried to insert the tube while she slept. It half-worked once.
To get enough nutrition from a tube, a baby becomes a machine. Stella needed to be fed every three hours, and feeding could take up to an hour. I worried that my extreme tiredness would lead to mistakes. What if the tube wound up in her lung?
I lived with the fact that this whole disaster unfolded because my milk caused my baby pain. Every time she nursed, she wound up in agony. She would cry and turn away. In hindsight I realize she was fighting for her life. We both were.
Instead of feeding, she would gnaw her fingers, which smelled of stomach acid.
I worked around the clock to get enough calories into her. I used a spoon, a tiny cup, a small syringe, causing it to simply run down her throat. This wasn’t “feeding.”
Thanks to this continuous labor, she “ate” just enough to get by, before the tube. She didn’t lose much weight, and she did grow longer, but she didn’t gain any weight either.
I just needed to try harder. ‘You have to hold her like this,’ said one lactation consultant. ‘You haven’t established a proper latch,’ said another. ‘You don’t seem comfortable. Let her come to you instead of leaning toward her,’ said yet another.
Later I would realize that one of them was at least partially right. Being neurodivergent, I was so used to following the lead of others, so used to being wrong, I couldn’t relax and let someone come to me. Not even my own baby. I felt I had to bend over backward, or forward in the case of nursing, to keep an interaction from falling apart.
At first, no one believed me. But then she started to look pale, even a bit gaunt, with a grayish cast. Her resistance to nursing or bottle-feeding turned into an all-out aversion. By then, the problem was so severe that a feeding tube was necessary. It wasn’t inevitable.
With the benefit of hindsight, I sometimes wonder how it all would have played out if I was neurotypical and communicated neurotypically? What if I was more reasonable, less brutally honest? More clear, less direct?
“We just have to get her through this,” I would think constantly. After all, she was a healthy baby. She just hated to “eat.” That’s all.
Meanwhile, my daughter and I were alone for up to 12 hours a day, five days a week. Compared to my pre-pregnancy self, I was skin and bones. I couldn’t take care of myself. I really couldn’t.
We didn’t have access to a car most days. Freedom came from taking walks, between tube feeds, through the park and by the shops along the strip near our rented house. Stella and I would stop in just about every day at my favorite coffee joint and paper goods boutique, and the grocery store.
Here and there, as usual in an area of Seattle so close to downtown, I’d see syringes on the ground during our long walks. They were wedged into the cracks of sidewalks or nestled in the mulch of garden beds. Part of the infrastructure.
These syringes were functionally different from those I used to feed my baby, but syringes all the same. I noticed that my reaction to seeing discarded needles on the ground was no longer involuntary disgust or general frustration with a system that doesn’t care for people. Concern became visceral rather than abstract. I thought, “That’s someone’s child.”
Part 2: The Choice
In the thick of the tube feeding haze, Christmas season in full swing, I watched television while Stella napped. A holiday-themed diaper commercial showed angelic infants dreaming in their bassinets with a carol-turned-lullaby as soundtrack. Their smooth, round cheeks were unmarred. Their peacefulness complete. Against my will, bitter tears burned my eyes. I found my entire self twisted with envy, boiling with rage.
Until one week before Stella’s birth, I worked as a copywriter at an ad agency. I’d written prose about large cinnamon rolls and slightly larger ski resorts. I could imagine the creative brief, concept, pitch–the entire process that resulted in that carefully targeted manipulation. But the nerve hit was so deep, beyond the reach of rationality. In the part of me that knew I was defective.
Since then, there have been so many revelations and reversed courses in my path through motherhood, far from any well-worn route. But I now look back to this low, just me sitting alone in the artificial glow of an overwrought diaper commercial, as a catalyst.
During that moment, I knew I couldn’t stay there, in that dark place. Jealousy doesn’t sustain you. It drains you. Anger isn’t nourishing. It eats you.
I sat in my fury and envy. Confronting the ugliness, I made a choice to not feed it with self pity. It was not going to be easy. I didn’t know how. I just knew something had to change. If not for my sake, then for Stella’s. It was a start, or a promise to start.
That decision soon led me to write. I’d started a blog, half-heartedly. Perhaps I could use it to keep my feelings, unlike the formula, from turning rancid.
I shared updates with the family on how Stella was faring and how we were managing. Her latest milestone, most recent medical appointment, and how much she was taking in by tube–each milliliter accounted for in a spreadsheet I referenced in reports to Stella’s doctors. Increasingly, I also shared my experience in the struggle.
In the weeks that followed, the blog became a beacon. I began hearing from mothers, across my city and around the globe, who’d found our story. Their babies, too, refused to eat and were given feeding tubes with no plan for weaning from the tubes. No end in sight.
I got to know several of these women, sharing phone calls and emails, desperation and encouragement. We did the same anxious things and thought the same anxious thoughts. Our feelings, stories, and longings were not just similar, but practically identical, despite our differences in cultures and backgrounds.
There was Erin with her grace, sense of humor, and a baby boy who seemed a lot like Stella and was born within days of her. Hatice was passionate, honest, and generous, and even sent Stella presents from Singapore. With Sylvia, originally from Costa Rica, her soul was so torn apart that it made her courage all the more moving. Rocio showed such depth of devotion and commitment to her premature son, helping him overcome his feeding aversion after months in the NICU.
I still marvel at how we were all able to connect on a little virtual island in the middle of the internet ocean. Alone, together.
Thanks to them, I began to realize that I wasn’t a failure or problematic or a pain in the ass for complaining to doctors constantly. I was a mom, doing her best in a challenging, isolating situation.
We had empathy for each other. And soon I started to develop empathy for myself. When perceiving an absence of empathy from others, I no longer experienced a free fall into anger, allowing me to be more present. I now had a foundation to stand on.
By the time Christmas came around, I had developed a bit more confidence. I found moments of peace even in the face of the same tube-centered reality. I started to tune into Stella and trust my instincts, rather than look to “experts.” That’s when things started to change.
Part 3: The Leap
After months of tube feeding, Stella hit a plateau. She never took more than about half of what she needed calorically for the day by mouth, the other half by tube. And aside from some anomalies, that’s where she stayed.
I knew that the tube had to come out. The pain that caused Stella’s feeding aversion was gone. Also eliminated was the pressure from me in trying so hard to get her to nurse, which worsened the aversion. She’d had time to learn that eating was not a threat, not a precursor to pain.
The tube had become more of a hindrance than a help. Making swallowing difficult and allowing a gateway for reflux. Overfeeding was easy, since there was no hunger gauge and only a prescribed amount of formula per day, so vomiting was common. Yet most of her doctors seemed to believe that one day, Stella would miraculously take all calories orally, and only then would the tube be removed. I disagreed. I found research to support my gut.
This situation has become more common. Tube feeding of babies, and resulting tube dependency, has exploded. This is partly due to an increase in premature births, with babies needing more time to gain the strength and oral motor skills that typically develop during a full-term pregnancy.
Also, it’s now easier for hospitals to send parents home with tube-fed babies. The digital pumps are small and portable. But technology advances so much faster than our understanding of its human impact.
Many babies similar to Stella, following resolution of reflux, milk protein intolerance, or whatever caused eating refusal, remain on tubes. Sometimes for years and years. I knew we had to give her a chance. We had to remove the tube, and see if she would reconnect with hunger and eat enough to thrive all on her own.
Just after New Year’s, we took the leap. I remember Stella’s smiling, tube-free face that day. How nervous I was, but also hopeful. There was only one thing for me to do–offer the bottle when she showed hunger cues. The rest was in Stella’s hands. No more battles.
In those first days, she did take more from the bottle. But not what a baby needs to grow and stay healthy.
After two weeks without the tube, she hadn’t gained weight and Stella’s pediatrician leaned toward putting the tube back in. Panic coursed through my veins and, heart pounding, I told him that she needed more time. He agreed to support one more week without the tube.
Right around the three-week mark, it happened. Seemingly all at once.
Whereas previously Stella would scream, cry, and panic at the sight of a bottle, she started to lunge and grab at the bottle. She’d even cry when it was taken away empty. Stella drank more than double the amount of formula in one day than she ever had before.
Her occupational therapist declared, “Stella has internalized the joy of eating.”
Trauma leaves a mark, but so does the experience of pushing through. After Stella’s dramatic turnaround, on those days when she ate less, I’d still worry despite knowing all babies are in fact not machines but humans whose hunger varies from day to day. Yet I also fundamentally trusted myself to handle challenges and fulfill the needs of my child. That may have been the biggest miracle of all.
The change was thanks to a baby who knew what she needed, an overwrought Christmas diaper commercial, a largely unknown blog, and fellow mothers who gifted me with understanding.
The tube was gone. Stella wasn’t hungry anymore, and neither was I.
(Note: Remaining holiday stories can be found here as they are released each day through 12/24, and ever after.)
A few weeks ago, I noticed a distinct change in Stella’s vision. Bam! It could not have been more obvious if she slapped me across the face and said, “Damn it, mommy woman! My vision is changing! Give me a god damned hug!”
In short, her peripheral vision opened up in dramatic fashion. Last year, when the esotropia hit the amblyopia fan, I would not have even known that Stella’s peripheral vision was limited if not for the input of our developmental optometrist and vision therapist. Our ophthalmologist never made mention of peripheral vision, which is a sizable piece of the pie in terms of how we take in our surroundings. It affects how we feel, not just how we see. Anyway, I suddenly had clear evidence that Stella’s peripheral vision had been turned on or amped up by the yoked prism goggles, or at the very least she became more aware of it and more tuned in to her surroundings.
How did I know? Walks became more stressful for a while. We live in a bustling urban neighborhood. In fact, it’s been declared the dessert capital of Seattle, with quaint cupcake, gelato, ice cream, chocolate, and pie shops all within a couple blocks. Strolls can be highly caloric, though I like to think we break even, what with the ambulatory mode of transport. For a while during this period of visual transition, when we walked along the sidewalk and approached a crosswalk leading to some sort of sweet destination or none in particular, Stella would get very upset. She experienced panic at intersections. At first I didn’t quite get it or its significance, and in my ignorance probably thought, “Yeah, I wish the cupcake place was closer, too! Mommy needs chocolate NOW!” Honestly, her agitation was too high to downplay and her actual reasons became clear quickly. Her anxiety was sparked by cars approaching from the cross street. She reacted as if the cars (moving in our direction on the cross street, so at a perpendicular trajectory, and I should really have my engineer husband proofread this) were coming straight for us. She lacked the common, seemingly natural understanding that vehicles would stop for us if we just waited at the curb. She was downright afraid they would hit us–even if they were a good half a block away. Stella refused to walk all the way up to the curb to wait to cross, she wanted to stay back from the road, so that’s what we did for a while. Until the fear faded away and she found a new “normal.”
Stella simply wasn’t used to being able to see the cars’ motion in her periphery. The difference was clear as day and her reaction was made my heart race. I knew that a sizable shift was taking place. My gut had no doubt that this was a positive development, and that she was simply noticing the previously unnoticeable, but I also felt her visceral fear and desperately sought to soothe and reassure her. The intersections that never bothered Stella before, with the usual rhythm of cars coming and going, were now somehow very different to her. This was around the time that I noticed, during a vision therapy session with the yoked prism goggles, that she was locating letters on the floor without looking directly at them.
As she has time and time again throughout her 2.75 years, Stella adjusted. She learned that this is the way streets and intersections and crossings work. That cars approach but are not actually barreling for us. It wasn’t long before she incorporated this new broader, more inclusive view as normal. Stella now seems less afraid of most things, in fact. She’s been more and more social and talkative, and increasingly adaptable in general. Her babysitter recently marveled at the fact that most of Stella’s talking to her had been echoing, simply repeating what she’d said, but now Stella initiates and offers her own thoughts. The echoing is drastically reduced if not gone for the most part. We recently had company and Stella brought item after item to Cody’s best friend Tom, engaging him excitedly and chatting away. This is new behavior. Part of it may be simple advancements that come with age, but I think just as much is related to her vision. I have other observations to back this up, like her weeks-long fear of playground structures and other kids on said structures. That’s gone, too, and its disappearance coincided with what I’m calling, as you can no doubt guess having read my witty subject line, “The Great Peripheral Awakening of 2011.” If only the United States’ financial industry could follow suit.
Life is less stressful and more secure when you are aware of your surroundings, I imagine. To me, nothing feels better than seeing her happy. To witness her blooming into this more engaging, engaged, often fearless kid.
Like many people with esotropia, her vision has been focused centrally–like tunnel vision to some degree. We’ve done vision therapy for almost nine months now, and have devoted many recent weeks to use of the yoked prism goggles (20 minutes a day at home, with 10 of those base up and 10 base down) to open up her field of vision. Vision therapy, including our goggle time, will likely end in a few weeks. This Friday, Stella will have an exam with our opthalmologist, and a couple weeks later we’ll head in to Alderwood Vision Therapy see our developmental optometrist, Dr. T, for a progress evaluation. This is a crossroads. I’m still nervous about her amblyopia, and about whether her prescription will increase. But I’ve seen real progress that can’t be denied, including the minimizing of her toe-walking. I’ve been amazed on a weekly basis by the thoughtful, individualized approach and powerful yet nuanced, seemingly subtle but life-changing, results of vision therapy.
It’s been one hell of an eye-opening journey! (You didn’t think I’d given up terrible vision-related puns, did you?) When I look back, I’ve been most struck by my sharp yet sweet two-year-old Stella and her ability to adapt to a new way of seeing the world, a place that to her now feels wider and more welcoming.
I have the good fortune to be writing copy for a really delightful web-based company whose product is perfect for moms like me. Currently, I’m both collecting and writing inspirational quotes for their use. It’s fun work, and hilarious at times–in my brain. Especially when I write lines myself that are supposed to sound incredibly wise and timeless. Seriously though, this is right up my alley. My favorite proverb is Japanese and it’s been on my Facebook page and tucked away in an old post on this blog for a while: “Fall seven times, stand up eight.” Yes! That just fires me up! I have the complete pleasure of sifting through wisdom and getting paid for it. I get to let my highest self take over and come up with words that sing. But my mind can’t help but wander sometimes. Here are a few of my so-called “original quotes” that didn’t make the cut (i.e. they came to me and I mentally deleted them immediately, preventing them from being typed into my crudely formatted Word doc):
Get it done. Even if it’s a complete disaster.
Dinner cooked and not cleaned up is better than starving your family.
A snack in time saves a meltdown.
Go outside of yourself, and your home. It’s boring inside sometimes.
A tantrum is just a toddler’s way of teaching you about adversity, and the value of sanity.
You don’t know your worth of until a two-year-old hurls their disgustingly expensive glasses at you.
Be one with the mess. A dirty dish never killed anyone. Except maybe due to food poisoning in the instance that it was used again without washing, which of course you would never even think of doing.
Possiblity lurks in every corner. You either seek it out, or miss out. Or, while looking for it you get sidetracked and spend an hour using the handheld vac to eradicate dust bunnies, hunched over like a maniac never pausing to realize that you could have done it in five minutes using the “real” vacuum.
Time is but an illusion. Unless you’re the mother of a toddler, in which case it’s both non-existent and precious beyond words.
Farsighted toddlers like to keep their mothers near.
A missed nap is but a drop in the ocean of frustration.
The all-encompassing love of a child squeezes the heart and the brain. Take breaks.
In the first chapter of John Gottman’s wonderful book, Raising an Emotionally Intelligent Child, my current daily life is illuminated: “Behavioral psychologists have observed that preschoolers typically demand that their caretakers deal with some kind of need or desire at an average rate of three times a minute.” Stella is officially two and a half, 38 inches tall and sleeping in a big girl bed. She has more demands and opinions and upset and glee now than even just six months ago. She’s in some sort of developmental transition period. At times I’m awed and at others, I’m borderline insane. This is a fun but challenging age requiring tons of patience. A tricky age indeed for vision therapy, which requires focus, patience and the tabling of those smaller demands in order to accomplish something she doesn’t fully understand. (I do think she gets it partially, though.)
Stella recently had two evaluations. One with her pediatric ophthalmologist and the other with her developmental optometrist, within about a week of each other. The conclusions by both were encouraging, overall, but quite different. Our intention was to use the results to gauge how vision therapy was going, especially since Stella’s been resisting more. We wanted to figure out whether we should take a break and come back to vision therapy in six or so months, or carry on.
The ophthalmologist determined that Stella’s amblyopic eye is 20/40 but bordering on 20/30. And that her other eye is 20/30 bordering on 20/20. They go with the lowest number, I suppose, in order to crush parents’ spirits–I mean, in order to be conservative and not overestimate visual abilities. (It does make sense.) She very cheerfully told us we could reduce patching from three to four hours to just two hours. I have not told her that we’ve been patching differently than she prescribed. Instead of patching three to four hours a day with an adhesive patch placed directly on Stella’s skin for complete occlusion, we’ve been patching two to three hours a day with Magic Tape over Stella’s glasses lens, and doing vision therapy, which they will hopefully remain ignorant of because I don’t want it to taint their assessment or treatment of me and Stella. It was reassuring to hear her, someone who said Stella may have to patch for a few years, say that patching was effective and that we could reduce it. At the end of the appointment, I asked her, “So, is there anything else we can do for Stella?” She hesitated for a split second and then said, ‘No. It doesn’t matter what they do while patched.’ And that was that.
Hold onto your hats. In our evaluation with the developmental optometrist, Stella showed 20/20 vision in both eyes. This is huge, and I haven’t really come to fully believe it yet–though I saw it with my own 20/20 eyes. It took Stella a tad longer to see the targets with her amblyopic eye, but not too much longer. She could see the chart’s 20/20 line far away and up close, with both eyes. Sometimes answering instantly, when the smiling doctor playfully sang “quickly quickly!” Why there is a discrepancy in performance between the two appointments, I’m not sure. The testing procedures and atmospheres were certainly different. Mainly, more time was taken at the optometrist, with more nuanced testing done.
Randot Stereo Test
While I was stunned when Stella identified the teeny tiny symbols (bird, cake, etc.) indicative of 20/20 acuity, I was just as thrilled when, during that same optometrist appointment, Stella was able to see three 3D circle images in the top left section of the chart (the Randot Stereo Test at left). Last time, she didn’t get any of those and saw only one thing pop out at her–the 3D character in line A in the bottom portion of that left panel. Alas, she still only got one in that section. I suspect that her attention span complicates this, and the doctor did acknowledge that it’s possible Stella can see more than she is able to indicate. But perhaps not. As I’m known to say these days, after over-analyzing some Stella-related concern to the point of boring even myself, “Who the hell knows!?” I’m just grateful for the improvement.
The ophthalmologist’s 3D testing was much faster and simpler. Instead of a multi-layered chart with different lines measuring different degrees of stereoscopy, they used a single large image of a fly–the Stereo Fly test, which I learned about on Strabby (more on Sally and her blog in a minute). Stella seemed to try to pet the insect after some coaxing. They nodded approvingly. I wondered what Stella saw and thought and wished she could describe it to me.
I was crestfallen to hear, at the ophthalmologist’s office, that they saw no improvement in Stella’s vision. Yet they seemed incredibly happy with how she was doing. They noted that the acuity in Stella’s amblyopic eye is and has always been above average for her age. Her other eye’s acuity (with glasses, of course) is way above average. They said her vision was developing very nicely.
Both doctors concur that the eye crossing (esotropia), so far at least, has been eliminated by the glasses. Perhaps with help from vision therapy, as I believe the eyes did cross in exam with glasses earlier on in this journey. I haven’t seen Stella’s eyes cross in such a long time as they are aligned when she wears her glasses, which is all the time, excepting bedtime, bathtime and her weekly half hour of swimming (prescription goggles may be in her future) and occasional fits of toddler rage. Stella’s eyes did not cross in either of the recent exams, even after the typical attempts to break alignment. This is huge, often overlooked by myself and Cody, and worth celebrating with lots of wine. I have so many pictures from her babyhood in which I can now immediately detect the not-so-obvious difference in her eyes’ positioning. We also have photos and videos from her ER visit at 18 months of age, during which both eyes were severely crossed (seemingly out of nowhere, though again, we realize now that they’d been slightly misaligned, frequently but thankfully just “intermittently,” her whole life). We keep the ER images as a reminder of why we’re doing all of this. It’s very difficult for me and Cody to view them, because she looked so vulnerable and clearly couldn’t see anything except foggy blurs. But they’re powerful appreciation boosters, and quickly give me perspective when I’m stressing about Stella’s refusal to go to bed without getting up ten times to talk about Papa Bear’s porridge or flamingos or other topics meant to engage me and delay the train to Snoozetown by a good three hours. (And breathe!)
The bottom line is that her eyes–their refractive power and degree of slight astigmatism and as a result, their acuity–are different. It’s refreshingly simple. The two doctors agree on this. It’s the discrepancy between the two eyes that has led Stella down the path to amblyopia.
Both doctors, seeing Stella through their respective lenses, were very positive. Through the course of both appointments, I was amazed, disappointed, encouraged and informed on several levels. I walked away from these evaluations with some real reassurance, but also some points to ponder endlessly and inanely. Stella’s degree of stereopsis (3D vision) has improved wonderfully in just two months, but further improvement is needed. I wish I’d questioned the ophthalmologist more on their take on this. Do they think Stella has normal 3D vision because she tried to pet the fly (I think we called it a bee)? Are they settling by assuming, “at least she has some 3D vision,” or do they genuinely think she has age-appropriate stereoscopy? I wondered aloud to the developmental optometrist: When Stella has moments of experiencing 3D vision, does it freak her out and lead her to suppress her amblyopic eye? Our optometrist said that yes, this can happen. Which may explain why Stella frequently says, “Mommy I need a break!” But, the doctor explained, if I’m around, serving as Stella’s anchor and emotional safety net, it shouldn’t be an issue. For that reason and many others, I am so happy that I get to be with Stella during this time in her life. I get to be there to eat the pretend lunch she prepared and soothe her when her vision acts up (though I never really know for sure) and observe all the little things that indicate what she’s seeing and experiencing–which prove helpful to this process but might otherwise go unnoticed. I see how her peripheral vision is really good now. I see that puzzles are a breeze. I see her push her left lens closer to her eye. I hear her say things about her eyes that give me hope. I’m fortunate to have this time. Happy to take all (okay most) of it in.
These are the symbols Stella identifies.
These exams were more than just “let’s see how she’s doing” meetings. This latest evaluation, particularly with the developmental optometrist, was a crossroads. I was nervous. I feared Stella would feel my heart pounding as she sat on my lap in the big black exam throne. We came to this point of decision-making because it’s not only been increasingly tough to get cooperation from Stella for vision therapy at home, but also in the office at times. Some exercises are much more well received than others both at home and in the office. Some appointments are simply better than others and I still believe that she gets a lot out of all of them. At home, it can take over an hour to get 20 minutes of therapy done. (I find that time hard to fit in comfortably–but I suspect other, more normal and organizationally proficient moms might do a better job of this so I really don’t want to deter other families who have a child of two and a half who might greatly benefit from vision therapy.) We’ve been told to do the exercises earlier in the day, when Stella is less tired and there is more natural light, because we tended to shove them in at the end of the day. After a glass of wine, I’m a much more effective and relaxed vision therapist. But I am slowly getting better at overcoming my dread of possible screaming and infinite dawdling and learning to break therapy up into small chunks. A quick matching game (with the patch) before lunch. Sticking skewers intro straws while patched and eating dessert. That sort of thing. Did I mention that I’m not very organized? If The Container Store had a blacklist, I’d be on it. Though I do have a big green plastic box in which I dump all of our vision therapy games and tools, which is a true Martha Stewart moment by my standards.
In the end, due to her gains in 3D vision and acuity as witnessed in the optometrist’s office, and even the ophthalmologist’s thumbs up assessment of Stella’s visual status, we’ve decided to continue vision therapy for another few weeks, at least. With an emphasis on use of the yoked prism goggles, which merit an entire post (coming soon), and more physical exercises that engage the vestibular system and body as they relate to and inform vision, from what I gather, helping Stella’s brain devise a more accurate map of space and her place in it. Stella enjoys those activities more, anyway. Bouncing, rolling, running? She’s in! Donning red/green glasses and slowly scanning the kitchen floor for matches, MFBF style? She’s so done with that particular game. She used to get 15 matches in one shot, now I’m lucky to get five reluctant matches worth of cooperation and sometimes she refuses completely and we both end up in tears. So I have to roll with it and be more flexible than ever. Putting those cards on the wall over the couch and letting her bounce around while searching does help make it more novel and fun. But I’m not sure that exercise is worth it anymore. Stella’s vision therapist agrees and is going to move us along to some new MFBF exercises to build upon this work and mix things up. We really like her–she’s had letters thrown at her, cards torn out of her hands, and shrill, blood-curdling screams shatter her eardrums, yet she keeps a cool head at all times. Me? Not so much. I sweat during those appointments to the degree where I stash deodorant in the diaper bag.
So we are at the beginning of a big vision therapy push. Can I help Stella get to the next level? I sure hope so. We’re going to do our best. We’re seeing progress and it would kill me to break now especially with the promise of yoked prism goggles just starting to be a staple in her vision therapy buffet. If a break is needed after that, fine. But if so, we’ll be back at vision therapy as soon as Stella is ready. Do kids become more cooperative at three? Good lord I hope so because caring for a two and a half year old is like playing with fire. I’ll tell you what, though. I appreciate Stella’s strong will (the screaming? less so) and don’t blame her one bit for resisting patching and exercises, the purpose of which she doesn’t comprehend. Between that and patching, we ask a lot of her. She does amazingly well for her age, and knows her numbers, shapes, and letters better than many kids twice as old, which has helped make a lot of exercises possible. As they say where I’m from, she’s wicked smaht. Don’t even get me stahted!
It’s been twenty seconds since I’ve heard, “Mommy? MOMMY!?” So another Stella need will arise now and I must go. But first a shout-out to our comrade Strabby, who recently had a huge vision therapy breakthrough using a lot of the same therapeutic tools that Stella employs. It is so fascinating to hear her account of her first glimpses of “3D-ish” vision–I bet that’s what Stella was experiencing when she said, “I can see with both eyes!” Strabby gives me a better idea of what Stella might be seeing and going through, which helps keep me motivated. Thank you and congratulations, Strabby Sally. Keep it up. Lead the way to 3D-ville, baby! We’re right behind you!
Yesterday was sunny and crisp. A Golden Delicious apple of a day. Okay, a frozen one. I’d recently read about how incredibly important and beneficial outdoor time is to kids’ eyesight, and was determined to whisk Stella off to the neighborhood park immediately after her nap. Stella woke up, and after wasting about 30 to 45 minutes doing absolutely nothing in particular, I removed the eye patch from her glasses and we headed out on foot.
Half a block into our walk, which was really more of a run, Stella seemed to have a revelation. I saw it before she said a word. She suddenly paused, looked around, smiled, and excitedly exclaimed, “I can see with BOTH eyes!” She went on to make this declaration at least twenty times. “Mommy! I can see with BOTH eyes! I can see the leaves. I can see the berries. I can see with BOTH eyes! Mommy! I see with BOTH EYES!” While she was having a great time, seeing with BOTH eyes, my mind raced to interpret this statement in relation to her amblyopia and strabismus and vision therapy. I tried not to let my hopes soar, and simply focused on the happiness of the moment. She was thrilled. I was spellbound and silent, mostly. I did say, “Yes, you CAN! You can see with BOTH eyes.”
What did Stella mean, exactly? It could be clear, simple, and run-of-the-mill. Even with her amblyopia, Stella does see with both eyes–with one more than the other, but still. I see with both eyes, as do most people, obviously. Was she simply making a smart, toddler-esque realization about the world and how it works? Or was a shift taking place in her vision? The whole point of our current vision therapy and patching efforts is to help her see with BOTH eyes, equally. Out of nowhere, she was expressing the essence of everything.
I mentioned the incident to Stella’s vision therapist today, and naturally, she found it very interesting. We both acknowledged that because Stella is two, it’s hard to know why she was saying that she can see with both eyes. But yes. Be still my beating heart! It could be that her eyes are working together better. Binocular fusion and increased stereoscopy (3D vision) could certainly create such an excited and interested reaction. On the other hand, it’s also possible that she’s seeing double–which isn’t necessarily bad. Sometimes kids in vision therapy see double here and there as their brains figure out the path to binocular fusion. But I don’t think that’s it, because she had no trouble grabbing small berries or pebbles, no difficulty running fearlessly up and down the small but steep slope that runs parallel to the sidewalk. She made eye contact with me frequently and purposefully.
When Stella’s eyes crossed severely on that day last April, the day that (thankfully) set us on the path to glasses and patching and vision therapy, she couldn’t see or do much of anything. Eye contact was impossible. She could walk, but not as steadily, and if told to walk to mommy, she’d miss me completely and sail by to my left, aiming at one of the two inaccurate, fuzzy mommy images that she saw. Her arms flailed in front of her, grasping. She wasn’t scared. She seemed dazed and thoroughly amused, playing around in the blurry void. Nothing of this sort happened yesterday. There was a general feeling of clarity, in the way she spoke and behaved. Regardless of what Stella was actually seeing and experiencing, I view this small but striking incident as positive development. Even if her vision was not being transformed in that moment, it was still wonderful to hear and behold.
Due to a rough night of broken sleep, today’s vision therapy session was challenging. Stella was tired, and her fuse was short. But we did some solid work, and learned some new exercises. During the long-ish drive home, again I noticed something out of the ordinary. I looked back several times to see Stella positively beaming. Smiling such a sweet, powerful grin while gazing at something specific–one time it was the cherries hanging from the rear-view mirror. Stella smiles a lot, but this was different. Focused, for no obvious reason. We were listening to NPR, so I know music wasn’t the spark for her pronounced delight. I think it was her eyes again. Maybe she was seeing double and found it entertaining. Or perhaps she was seeing the world in full depth and dimension. How beautiful that would be.
Yesterday afternoon, during Stella’s nap, I was working here at the computer with sunshine pouring in from the window when thought I detected the slightest noise behind me. I swiveled in my chair and was jolted by the sight of Stella, standing just a couple feet away. “Thriller” would’ve been an apt soundtrack for that moment. She scared the living crap out of me–but thankfully I only gasped and didn’t scream. Stunned speechless by her stealth, I suppose. Come to think of it, her disheveled hair, squinting eyes not yet accustomed to light, and baggy sleep sack did give her a ghoulish look. She got out twice more before I finally gave up on that particular nap time and accepted our weekend fate: Shopping for a big girl bed. And perhaps a small bell to be sewn onto her pajamas.
Stella, nailing "The Treat Game" with her assistant, named Baby.
Stella knows how to use “WHAT!?” for comedic effect. At PCC, the natural grocery store we hit up to three times a day, there are fun sculptures outside. In reference to one of them she exclaimed, “A dog on a bike–WHAAAT!?” Just a sliver of a pause inserted. She went ahead and tacked on the prolonged “WHAT!?” in a flat yet exaggerated way, the timing and tone appropriate for SNL or In Living Color. Clearly, she’s a comedic genius bound for stand-up stardom.
As I’ve hinted at before, here and at Little Four Eyes, accomplishing our allotted daily vision therapy is a challenge. A grind. More for me than for Stella. In the way that getting up at 5 AM is challenging for a wine-guzzling nightowl. (I swear that’s not me. Usually.) I’m not the most organizationally proficient mom you’ve ever met–unlike my cousin who organized, within an inch of its life, the kitchen drawer that holds her young daughter’s dishes and utensils. To me it was an awe-inspiring thing of unattainable beauty. Honestly, I’m just happy to have identified a drawer into which I can toss that stuff from across the room, since it’s usually left open. When it comes to what needs doing in daily life, I get it done, but piles, toe-stubbing, sweating, and flat-out sprinting are involved. My creativity helps compensate, though. It kind of makes up for the disarray. I write fabulous copy for a range of clients in order to pay for Stella’s vision therapy and other stuff, and enjoy it, and I easily conjure up ways of executing or adapting vision therapy so that it’s somewhat innovative and actually fun for my two-year-old, who is quite young to be doing vision therapy in the first place. I find this type of work–the creative part of vision therapy, but not necessarily the execution–incredibly motivating and satisfying. Which is only natural, but somehow my difficulty seems much more severe than it should be. Of course, it’s not some horrible Sisyphean nightmare either. I believe in vision therapy. Though I struggle with getting it done, our daily work is incredibly valuable and effective, and Stella is resilient, adaptive and more cooperative than she gets credit for. Oh, and she’s creative, too! Using random objects like bulb syringes and blocks and ribbon, she’ll construct a tall, thin structure with a rounded top and say, “Look, mommy! I made the Space Needle!” And you know what, it really, really looks like the Space Needle. Clearly, she’s a brilliant engineer/designer bound for international renown.
Genius aside, when it comes to vision therapy, it really, really helps that she’s willing to step up to the very hardest challenges for a taste of Theo chocolate, made one neighborhood over from where we live, just down the block from Cody’s workplace and PCC. We often stop in for tastings, pretending to be tourists, though I’m not sure we’ve ever fooled anyone, even with our well-honed Boston accents, since we are loud, include a toddler wearing purple glasses, and head directly to the Hazelnut Crunch every time. In the context of “The Treat Game,” explained in my recent post at Little Four Eyes, she’s now grabbing two cards at at time so as to find matches twice as fast. Those red/green glasses just aren’t posing enough of a challenge anymore. Not when Theo chocolate is on the line. That’s my girl. But I know we can’t rely on chocolate. That’s simply the trick I keep up my sleeve. We have been in need of assistance for a while now.
As opposed to my mental lopsidedness, my sister is organized AND a creative problem solver. When I told her I was thinking of hiring someone to come here a couple times a week and help with our at-home vision therapy, she immediately suggested that I find an optometry student. I was all, “Brilliant!” Because wouldn’t you know it? We live right next to a giant university–WHAAT?!
So I got in touch with an officer in the pre-optometry club at the University of Washington and she kindly put out the word. I’ve received five applications from wonderful young minds! I’ll not only tell them everything I know about vision therapy and provide true insider information on to get Stella’s cooperation, but I’ll also throw in a pot of coffee and some sort of hourly rate. The peace of mind I’ll get, and the likely improvement in Stella’s outcome, will be worth it’s weight in Theo chocolate. Wait. Maybe I should pay my vision therapy assistant in chocolate bars? What can’t that stuff do?
And that’s not all! I’ve got a lead on a fantastic babysitter and zeroed in on a preschool that may just be ideal for Stella, due to its notably bigger focus on physical activity and fitness than any other preschool I’ve learned about. They have gymnasts and professional ballet dancers work with the little ones an hour a day–WHAAAT?!
Feels like we’re on the brink of being on a roll. We might even, after almost two and a half years, get some much-needed support–WHAAAT?!
Honestly, it’s not just Stella’s eyes that need the help. It’s me.