parenting

Update! I just launched a podcast: How do we deal?!

Posted on by amberhj

A quick heads up. My friend Dara and I just dropped the introductory episode for our new podcast, How Do We Deal?! Coping with the Confounding. NBD.

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.​

Here’s where you can listen to How Do We Deal:

Apple Podcasts
Spotify
iHeartRadio
Podcast Addict
Podchaser
Deezer

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.
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Special thanks to the amazing Amanda Zorzi for our amazing intro music and to the ever patient David Santos for editing the podcast.

You can also check out the How Do We Deal website and blog.

Endless gratitude for all who take the time to listen, follow, and support this new venture.

Note: Please bear with us. Sound quality skyrockets around episode 4. Don’t you love a good learning curve?!

The value of seeing differently

Posted on by amberhj

“Anisometropia” sounds like a mythical city built out of licorice, but it’s actually a vision condition that Stella has dealt with all her life in which the eyes’ refractive powers differ. On Friday, however, we picked up her new eyeglasses in which the prescription is the same in both lenses. This is the first time that her eyes are piecing together a “3D” view of world unimpeded by the obstacle of disparate levels of magnification.

Wearing her new glasses over the past day, she is noticing that small type is fuzzy. She hates it. But just like when she first wore glasses at 18 months old, we were told to allow a two- to five-day adjustment period before worrying that the new script is wrong for her. The hope is that after the brain has a chance to adjust to new visual information, and small muscles change their habits in response to different focusing requirements, the view becomes clearer with less effort required.

During our last optical shop visit, Stella told me as we waited for service, “My vision is sharp as a hawk, mom. I don’t need new glasses!” I launched into an impassioned explanation about anisometropia and her borderline amblyopia how this moment was a big deal–getting glasses with the same magnification for both eyes, finally! I did this because facts sway Stella more than platitudes, and because I needed to kill time while we waited as Stella was a bit agitated. Nothing is simple or easy, but many things are amazing. Someone with her prescription wouldn’t be expected to have great stereoscopic vision, nor see everything so clearly. But she does. It’s just an excess of “near work” that causes issues. It’s just hard to be farsighted, comfortable looking up at the horizon, in a heads-down nearsighted world.

Stereoscopic vision depends on the ability of the brain’s visual cortex to bring together the eyes’ different views of the world, using the similarities and discrepancies to make sense of distance, depth, etc. But what if the two images are so different that they don’t share a point of reference? What if one is more blurry than the other? What if it’s not automatic and takes conscious effort to see in three dimensions?

Great-great-grandfather of the Oculus Quest, the Brewster-type stereoscope circa 1870. Source: Museo Nazionale della Scienza e della tecnologia Leonardo da Vinci, Milan.

Every day last year, Stella came home from school with a headache. So, in every IEP meeting, I would try to remember to mention her vision: severe hyperopia, anisometropia, partially accommodative esotropia. It’s easily overlooked given how smart she is, and it’s overshadowed by the social-emotional challenges that snowballed in the context of an un-inclusive school environment designed to support neurotypical kids. Yet it’s undeniable that due to her vision alone, without regard to any other differences, Stella has had to work harder than just about any- and everyone else. She has contended with double vision at times, as well as pain and fatigue from reading off a screen or paper all day. To say I’m proud of how she perseveres is an understatement.

I noticed that after Stella listened to a book on her Kindle, she remembered every detail. At school, I was told at some point that she often doesn’t really retain key information from reading. Autism or working memory was cited. I suggested that maybe it’s because her eyes aren’t the most reliable way for her to take in information.

It’s so simple, yet so revolutionary, to suggest that people favor not only different ways of gathering information from their world but also prefer different types of information, flat out. And that this is okay. That’s the premise of neurodiversity. It makes sense that for most of humankind’s existence, neurodiversity was a given, so central to our daily life, our survival and our ability to thrive, because we lived in relatively small communities. I’d like to suggest that communities can be thought of as brains, each person with a different role or niche contributing to the functioning of the whole, just like different parts of our physical brains have different roles and niches contributing to our own overall functioning. Sure, there’s some overlap. Some people have similar skills. Some parts of the brain can pull double duty or pick up the slack when another part of the brain falters. But diversity is innate, and vital.

Today, most people are no longer enmeshed in communities, sharing the load of daily existence. By and large, there is no divvying of roles, no playing a day-to-day part in a living community “brain.” That makes life harder for most neurodivergent humans, with our spiky skill profiles. When your brain so heavily favors certain types of information and tasks over others, it’s hard to cover all the bases every day–from maintaining homes, careers, commitments, social connections and family relationships to saving receipts and making returns in time to remembering to sign up and actually signing up your kid for summer camp ten million months in advance or, I don’t know, contending with the Sisyphean task of figuring out what to make for dinner and then actually making it, step by step.

Some autistic and other neurodivergent people may struggle with certain aspects of daily life, while also noting and bringing to light details and connections that others overlook. Again, we’re all simply gathering or emphasizing (slightly or dramatically) different types of information from our surroundings. This is helpful in a community “brain” scenario. If everyone sees the world differently, and connects back to the group, we get a fully dimensional view of the world with more depth, color, detail, and perspective than we could ever get on our own or among those who are likeminded. That’s how civilizations are built. That’s how innovation happens. That’s humanity at our best. This holds true in any place where people come together in pursuit of a common goal or interest–neurodiversity, racial and gender diversity, and disability inclusion are all proven to boost business performance, for example.

Within social movements, most notably civil rights and women’s suffrage, there lies another take on the importance of diverging points of view coming together to bring new ways forward into focus. Having a so-called “militant,” more aggressive force–I think of Alice Paul or Malcolm X–within a greater movement can enable progress by highlighting the hypocrisy of a mainstream that demands nonviolence and yet is underpinned by violence itself, while in comparison making the more peaceful activist groups seem credible or “reasonable” to the reluctant majority, who otherwise would outright reject them.

Due to racism, sexism, and ableism, we value the perspectives and contributions of certain people over “others.” As such our entire society is afflicted with anisometropia. We can’t see all the beauty of the world, all the wonder, all the opportunities–because our field of view is limited. Stereoscopic vision requires that we not only take in what’s right in front of us, but what is all around us. (Our periphery is, ironically, central to our vision.) I think of the misguided souls who took part in January 6th insurrection and how ugly the world must seem to them, how much of the picture and possibility of our country they’re missing.

Miraculously, Stella never dealt with full-on amblyopia, a common outcome of anisometropia wherein the brain just can’t use both eyes together. The inputs are too different to reconcile, and over time one eye is tuned out in favor of reliance on the vision of the stronger eye. She likely avoided it through years of part-time wearing of an eye patch, vision therapy, and reliance on her bifocals. A lot of work. Interestingly, paradoxically, and perhaps relatedly, Stella has off-the-charts visual-spatial intelligence–now there’s a parent brag you probably haven’t heard before.

Little Stella rocking the Quoits Vectogram during a vision therapy session, years ago.

When toddler Stella’s vision issues were discovered, long before her autism diagnosis, I was fearful and unsure about where her visual abilities would land and how her life would be impacted. I sought peace of mind in the fact that of the many unique human vantage points that inform and elevate the collective are those who are amblyopic or otherwise visually impaired. A surprising number of history’s most celebrated painters were amblyopic, likely helping to explain their talent in capturing and translating the feel of a three-dimensional world in a two-dimensional medium. I did not expect Stella to be some sort of artistic genius or “savant,” but knew she could find her place and hone her strengths. Not just in spite of challenges but partly because of them and the unique view of the world they inform. I believe that now more than ever.

I’m eager to see Stella’s headaches subside and her comfort increase as she adjusts to her new glasses. We’ve come a long, long way from her early bespectacled years. I’ll never forget the day, after continually taking off her frames, she yelled, “I’m too big for this!” and snapped them in two. Message received, I never let her outgrow another pair of glasses. Pants and shoes? That’s another story altogether.

I’m excited to see how Stella’s self-driven life will continue to unfold in light of all she’s overcome and with the unique perspective she brings to every moment. Social expectations don’t guide her. Stella’s path is all her own, in a way that more conventional thinkers and neurotypical minds can’t really fathom. While it can be hard to navigate outside many of the guiderails of expectation, this form of freedom can also be a gift. I hope it will eventually feel that way for her.

Zooming out further, I’m stubbornly and cautiously optimistic that everyone’s lives, including hers and all those who are neurodivergent or disabled or otherwise different, can continue to grow richer and expand into their full potential. As we come to appreciate different points of view as not only valuable but essential, we can move beyond merely “seeing” and instead make sense of and discoveries within the world, appreciate deeper meaning, solve big problems, and realize greater purpose.

I now realize that my vision has improved along with Stella’s over the years. Nothing is simple or easy, but many things are amazing. You just have to be open to different ways of seeing.

The risk and rewards of giving a flock

Posted on by amberhj

If you’ve ever kept chickens, you understand life’s imperfect trade-offs of risk and reward in a more intimate way than most. And if you’ve ever medicated a chicken, you understand the delicate tipping point at which fear-fueled fight-and/or-flight teeters into resignation to fate. There’s something eye-opening about caring for a living creature so different from yourself.

We have five chickens, down from six after losing one of two Black Minorcas. In a gross turn of events, all needed to be dewormed early this summer. Turns out occasional worm infestation is a natural occurrence for many animals and a cost of freedom for chickens. Part of opting for quality over quantity of days and months and hopefully years. Exposure to the glories of sun and soil and air and grass, as well as the threats of bacteria, viruses, and attacks (oh my) from wild birds and animals. That’s the choice we made for them. Really, it was the choice I made because after the first visit from a robustly healthy red fox with loads of casual confidence, who lounged by the coop one morning as if expecting a waiter to appear with a cocktail and hors d’oeuvre, Stella wished to keep them locked up for their safety and her peace of mind. We had many discussions about the pros and cons of captivity for chickens, and never quite saw eye to eye.

As far as I can tell, a good life for a chicken unsurprisingly centers on a form of self-determination. It’s the ability to forage freely as part of an interdependent flock, and little else. It’s certainly not found in days spent standing in shit, whining and pacing. I know a thing or two about the human version of that.

One of our chickens, a Welsummer named Brownie, is so hard to lay hands on that during one pursuit, Stella brilliantly suggested we turn this chore into an actual sport. The thing is, this particular chicken never, ever seems panicked like the others. Just calm, focused, utterly determined, and highly skilled. Truly, Brownie could put the NFL’s most elusive running backs to shame. We’ll have her cornered, only for her to defy gravity by deftly leveraging wall-as-vertical-launchpad. You bend down, thinking you have her, at which point she will go up and over your useless hands with a quick ping-pong maneuver. Or she’ll pull a lightning-fast nutmeg and leave you in her dust, red-faced. Smooth as butter, easy as pie. That’s classic Brownie.

Out of desperation and exhaustion, we use sunflower seeds to entice and distract the birds, effectively luring them into a frenzied heads-down treat fest. It works or at least helps, most of the time, on all but the remaining Black Minorca named Floppy. She is Brownie’s polar opposite, such a flighty, untrusting bird. I struggle to categorize her as a “domesticated” animal, because she appears scared, wild, and wide-eyed at all times. In keeping with her old Spanish breed, she’s lean and aerodynamic, thanks to sleek black plumage and crackling, electric nerves. Floppy was named in a nod to her large, waving red flag of a comb, which flops over to one side, higher in the front and stylishly low in the back, a red beret on a soldier whose default mode is manic, all-out retreat. She is not brave, has zero dignity, but is impossible to capture.

The other Black Minorca, named Biggie and taken too soon by a fast-moving illness of unknown origin, did have courage and perhaps an inkling of a chicken version of dignity. It’s probably what did her in. She once flew up to the edge of the roof of our house. Claws raking and clacking against the metal flashing, she almost landed the ultimate perch up there, in outer space.

Biggie could also be found out on the sill of the window in front of my desk as I worked, side-eyeing me from outdoors like a peeved middle manager. Her fiery comb was huge, bright, and straight, and she was at least 20% larger than her Black Minorca sibling and all the other birds, from chickhood on. When an ailing raccoon languished like a furry drunk in the small creek bed beyond our back fence, Biggie did not leverage her apex status within the pecking order to lead the girls to safety. She stood at the fence and shrieked as if outraged at the raccoon, with the flock of her followers chiming in from behind her. It’s no wonder she was the first to go, but what a legend among hens.

Stella loves these insane chickens fiercely. She counts all five (six before the loss of Biggie) as members of her menagerie, which also includes her rescue dog Kansas, a mix of Border Collie and Corgi, and a Netherland Dwarf rabbit the color of chocolate and peanut butter, whom Stella named Reese. She observes the chickens closely, studying the emotive qualities of their changing noises and quirky behaviors in an attempt to understand. “What do you think she means by that, mom?” Sometimes I detect worry in her questions, sometimes pure amusement.

I have begun to think our flock was a well-intentioned mistake. Initially I thought it would be so fun and a source of daily interest and helpful work for Stella, perhaps even an added sense of purpose. But she is so attached to them, so worried about their wellbeing, that at times it feels like a trap. Like I’d set her up for a certain heartbreak, six times over. Stella’s depth of connection with animals, I realized, would make the loss of these feathered aliens more painful than I, decidedly not an “animal person,” can understand. She already lost two grandparents over the last couple years, moved across the country, and went through hell at school, barely making it through this last year.

We lost Biggie so suddenly. She became lethargic one morning, her once proud comb wilted, sickly pale, and blotchy–and died the very same day. Yet Stella handled it with more grace than I ever would have expected. She connected the loss to a graphic novel she’d read about a misunderstood witch who buries roadkill to ensure the animals’ peaceful transition to the next life. I would find out later that here were indications, in Stella’s writings at school, that the death weighed heavily on her.

In the aftermath, there lingered the possibility that whatever killed Biggie was highly contagious and the rest of the flock could follow. About a month after Biggie’s passing, all seemed well and I stopped worrying. That’s when our Crevecoeur named Bex, with her ridiculous poof of black plumage as signature look and anti-Darwinian vision impairment on top of her head, started “gaping,” seemingly gasping for air or struggling to swallow. Stella thought it looked like yawning. I knew it wasn’t. Could it be the same mystery ailment that took Biggie? Bex is Stella’s favorite chicken. Of course.

Coming out to open the coop in the morning, I would notice Bex with her back to the rest of the birds, standing like a statue in a world of her own, wind tousling her poof. This forlorn and ponderous chicken of French origin seemed to stare out into the woods mulling the futility of it all. No longer in sync with the shared flock mind, but contemplating the shrinking of one’s world that is prompted by the gaze of the other–what a truly disorienting realization for a chicken. I suspected gapeworm, but hoped for an existential crisis. I placed an online order for Sartre’s “Being and Nothingness” and a goat dewormer that could be safely used on chickens with the correct per-pound dosage.

As a general rule, Stella needs to be reminded of certain fundamental daily tasks, many times over, especially in regards to self-care. But I never, ever need to remind her to close the coop at night or help me with the chickens’ medication. She does these things unwaveringly.

While we usually wait until evening to dose the chickens, by midday Stella will inevitably say something managerial like, “Mom, just a reminder to help me with the chickens’ medication today.” Then, in between conversations sparked by Stella’s many daily questions ranging from “Do people keep shrimp as pets?” to “Are we really getting out of Afghanistan?”, she will mention it again and again. I appreciate her persistence, because I admire her empathy for and dedication to the animals and because due to my lack of dedication to the animals I’d likely forget. The reminders keep coming until a specific time is selected or medication is in fact dispensed.

A chase ensues, causing serious questioning of my own dignity, until Stella picks up a defeated chicken, holding her securely under her arm like a football and grasping the feet together to avoid getting scratched by dirty talons. Hand over the chicken’s impossibly tiny head and covering her eyes, I open the beak with my thumb and middle finger, gentle but firm and holding fast until, as if some switch is flipped, the chicken accepts her destiny and relents. Using a dropper, and totally weirded out, I dispense the milky white liquid onto the bird’s pointy little tongue, ensuring the medication is swallowed and not aspirated. I let go, the now calm chicken contentedly swallows the dose, and Stella releases the bird who immediately pecks the ground and returns to chicken business as usual. This is how it goes–for all except the Black Minorca named Floppy. For her, we have to wait until cover of night.

Last summer, we had to break the flock of their sneaky habit of roosting up in a large, dense shrub at the edge of our property. But these days, come sundown, they return like clockwork to their coop. That’s when Stella opens its little back door, crouched down with her eyes at claw level. Stella can then easily grab a sedate Floppy from her roost and only then does a struggle begin, sharp dinosaur claws wildly flailing, beak frantically opening and closing, body and neck contorting every which way–some seemingly impossible. Then the usual process unfolds, with more firmness and determination on our part. We remind Floppy that we’re just trying to help her, goddamnit. That her life is at stake and we don’t like doing this any more than she does! She finally gets the message, relaxes, and our medication duties end for the day. It’s our turn to relax.

Their course of dewormer complete, Bex still gapes occasionally (of course) but she is acting “normal” and no longer lost in thought. She and the other chickens seem fine. The goat medication was likely their savior, not the refresher on existentialism, but we’ll never know for sure.

We both hated medicating the chickens, Stella and I. But when illness strikes, unavoidably, it simply has to be done. Maybe that’s one of the reasons that at the end of a good or tough day, white knuckle moments and all, keeping our flock is not a mistake. Just another sometimes hard thing with lots of upside, if you look for it.

Down time. And looking up.

Posted on by amberhj

The inside-out view from the fort in the woods at the end of the road.

When Stella was three, she was head-over-heels into ballet. She took creative dance classes with some toe pointing and ballet basics woven in. At home, she’d wear her tutu and watch YouTube clips of internationally renowned ballet companies, memorizing the performances. The living room became a stage.

During this little window in her lifetime, I purchased our first tickets to go see The Nutcracker, performed by the Pacific Northwest Ballet. I remember being so excited to tell her, “Stella, guess what? We’re going to the ballet!”

She responded, “BOOM-SHACKA-LACKA!” and pumped her little fist in the air.

Her reaction is still the best thing I’ve ever seen.

And in this time of being sequestered at home, her energy and observations in response to the shrunken world, and the wider one of her imagination, keep my outlook from falling to low places.

Like when she paints a picture with an ongoing (i.e. never-ending) story narrative that includes Elvis Presley, hybrid animal people of all kinds (she’s part wolf in this scenario), and a backstory as Swedish royalty. Or when she says something very wise, out of the blue.

Online school has been an unwelcome presence but there are moments where she engages and shines. I particularly enjoyed one paragraph, with its signature brevity and potency, that she produced for an assignment that accompanied the class’ reading of Tuck Everlasting.

They were required to write three sentences in response to a prompt: ” Why would you want / not want to live forever?”

She wrote, “I don’t think I would want to live forever. Because I’d experience friends and loved ones come and go. And I’d be very lonely.”

Stella’s snail mail correspondence has been a truly delightful glimpse into her relationships with old Seattle friends, now 3,000 miles away after our move. There’s a maturity that comes through in the thoughtful written word, it seems. “I have not forgotten you,” and “The leaning tree has fallen,” reports a younger, very dear friend, the kindhearted, bright spark of a boy who lived next door to us.

Here in our Massachusetts nook, the neighborhood kids keep their distance but some cheerfully say hello upon passing by, on every single lap around the half-mile loop.

An older woman who lives nearby gamely tried out Stella’s zip line. (Mad respect, lady.)

A new friend brought a colorful dozen eggs from their coop just in time for Easter cooking and baking.

Recently I reminded Stella that my birthday comes around next week. “I’ll bake you a cake, mama,” she said.

And right now she is eating lunch. “These are great nachos, mom!” Stella just told me, as she tried to finish quickly before her online social studies class.

I savored her sweet appreciation for a moment until she mused, “Opa once told me that when he was in the military he only had five minutes to eat. They always served corn on the cob but he had never had it so he just plucked off the kernel things one by one.”

Opa is one of her grandfathers, who came to the United States from Belgium when he was a little younger than Stella. Perhaps she now has the space to reflect and connect dots between her own experience and that of others, even with a mandatory zoom call looming. Or maybe this is how she thinks all the time, and I now have the space to notice.

We drive each other nuts sometimes. She hates the sound of chewing, especially mine, for example. But as limiting as this pandemic has been and will continue to be, Stella is a persistent miner of the vast richness to be found in small reflections and living rooms and memories.

Dark circles and bright spots

Posted on by amberhj

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.

On my parenting journey, and “Far from the Tree.”

Posted on by amberhj

My child is strong and healthy. That said, at just four years of age, she has already taken part in occupational therapy (OT), vision therapy (VT), cranial sacral therapy, and yoga therapy (also called Integrated Movement Therapy or IMT). Her vision conditions, and early feeding aversion, have presented us with atypical challenges. Yet there is nothing “wrong” with Stella. No affliction that will define who she is. Deeply grateful for her essential wellbeing, I am always striving to provide the support she needs. An odd and awkward balancing act, at times.

I’ll admit that during her tube-fed days, while entertaining the worst possible outcome, I told myself that if she had to live her life with a feeding tube, the intervention could inform positive trajectories. I dared imagine her future as a groundbreaking artist exploring the increasingly common intersection of biology and technology. Or perhaps she could come to value food more than any average, orally eating person, and find renown as a chef who never enjoys more than a fleeting taste on the tongue but whose culinary innovations leave the ordinary far behind. These ideas seem foolishly focused on fame and success, but in my darkest postpartum, tube-feeding moments, they allowed me to envision a happy future for her wherein her difference was not just a detriment. I took comfort in knowing that the most inspiring people often have the most trying backgrounds. After a successful tube wean at just a few months old, she became an eater in short order. She is now four, and her sizable appetite won kudos this Thanksgiving from Cody’s 94-year-old grandmother. I can’t lie: I wear that compliment like a gleaming badge of honor. If Stella had needed her tube indefinitely, though, I like to think that we would’ve embraced it yet not let it dominate her identity.

I have worried about her far too much, and still do. More VT and OT are on the near horizon. Strabismus and amblyopia can affect motor skills, so the VT and OT are linked. When Stella’s eyes aren’t working together well, our world becomes less stable along with her binocular vision, and tantrums skyrocket. I question myself, my personality, my attitude, my words, my own diagnosed deficits, and then I question doctors, and PubMed.gov, and Google, to the point of black-hole depression. Instinctively, I blame myself for Stella’s every struggle. I prepare myself for the worst while researching, hoping, and double-checking in pursuit of the best.

My experience with motherhood is a soft, tropical breeze compared to the realities faced by the parents featured in Andrew Solomon‘s incredible and essential book, Far From the Tree: Parents, Children, and the Search for Identity. But then, toward the end of this gripping tome about parents of exceptional or “different” children,  he notes that a couple in London chose to screen embryos, essentially genetically engineering their child, so as to avoid the father’s severe squint. (For those with stereoscopically typical selves and kids, “squint” refers to strabismus or misaligned eyes.) This particular anecdote helped bring the entire book home for me, and felt like a sucker punch to the gut. I imagined their alternate-reality, unscreened child, much like Stella or perhaps the inspiring Stereo Sue, who would have been born cross-eyed. Surgery, glasses, and vision therapy could have corrected it, with much joy and love to be had in the meantime. Yet, strabismus was deemed too much of a burden. What an ugly and spiritually impoverished world, I thought, in which technology eliminates differences. What a waste of potential and perspective. What a horrible message to send: “We only want a ‘perfect’ child.” As if that exists! Then I think of the four eye doctor appointments we recently attended in less than two weeks, and I’d be lying if I said I didn’t wish to spare her from stingy eye drops, and double vision, and headaches, and frustration, and eye patches, and exhausting daily vision exercises. But you can’t take the squint from Stella. It’s part of who she is. To cut that out of the picture would be to paint a completely different child, the thought of which is dark, insane, and brutalizing in the light of our love for her.

Stella’s vision and the severe pain from my milk, and subsequent trauma from repeated insertion of an NG tube by ER professionals and yours truly, have likely affected her personality or personhood. We’ll never know to what degree. To assume that the impact is solely negative is a biased, ignorant, and even dangerous assumption. Among many other strengths too numerous to name here, I see a child who is an incredibly strong and increasingly eloquent self-advocate and self-starter, and who is very in tune with how she feels and what she needs. (She is the opposite of a doormat–not angry, but aware and, well, adamant!) It’s possible that these building blocks could lead her to become a defender of others’ rights and wellbeing as well.

As I marvel at Stella’s abilities and resiliency and simply enjoy mothering and being with her, I am anxious about possible gaps in development and the winding road stretched out before us. As children grow, visual demands increase. More “near work” and expectations of longer attention spans. Learning to read and write. Using scissors. Making friends and maintaining eye contact and higher level relationships with them. With bifocals and a year of vision therapy (undertaken at age two) under her belt, Stella’s visual abilities have served her well until recently. Her visual system apparently has begun to reach its coping capacity and needs help in order to support her continued development. She will benefit from an increased eyeglasses prescription, and an OT evaluation to help create a more targeted approach to vision therapy. In the meantime, I pray surgery won’t be needed and wrestle with uncertainty about whether she should go to Kindergarten next year, as vision issues flare, and her birth date just a week before the cut-off for Kindergarten acceptance.

For the sake of sanity and enjoyment, I longed to read something other than strabismus-oriented studies, optometrist’s blogs, and medical journals. But I wanted meaning and relevancy, not fluff. Far from the Tree was the answer, and led to some sleepy days for me. I read all 700+ pages almost compulsively. Filled with the stories of parents of children with Down’s Syndrome, autism, dwarfism, criminal behavior, and more, the book is sometimes harrowing but always heartening. I found it a welcome relief from typical parenting fare, which tends only to feed modern parental neuroses and our fear-driven obsession with perfection. Most of the parents featured in this book love their children with a depth they may not have achieved outside of their unexpected journey. The line between difference and disability is often blurry, and in that gray area lie gifts for those open to seeing and receiving them. The vibrancy of deaf culture and the contributions of Temple Grandin are good examples, among many, many others poignantly detailed by Solomon.

I feel differently about my role and experiences as a parent, thanks to Far from the Tree. I was affirmed by the book, and I think just about any parent would be. Current turmoil and all, I am more determined to do whatever I can for Stella’s vision, yet less destructively worried. And this mindset may fuel better decision-making. Check out this passage from page 22, which brought me to tears:

“The attribution of responsibility to parents is often a function of ignorance, but it also reflects our anxious belief that we control our own destinies. Unfortunately, it does not save anyone’s children; it only destroys some people’s parents, who either crumble under the strain of undue censure or rush to blame themselves before anyone else has the time to accuse them.”

To Andrew Solomon, with whom, by the way, I share the dread-filled experience of waiting for the results of a baby’s head CT scan, thank you for writing this book. In regards to my daughter, I’ll inevitably worry, and wonder how much intervention is enough or too much, and blame myself at times. But as a parent, I move toward the challenges ahead with more grace, having read Far from the Tree.

How do you solve a problem like IKEA?

Posted on by amberhj

Ah, the joy, elation, and shock that zinged through our brains when upon entering the giant maze, Stella demanded to go to the play area at IKEA. Smaland. We’d never even tried or considered it before. But finally she was ready, independent, proactive, long since potty-trained, and wanted to have fun without us, while we embarked on the sojourn that is an IKEA shopping trip. It was truly glorious.

As we signed her in, we were told in a dead serious tone that there is no jumping into the ball pit. No jumping. Into. The ball pit. A small pang in my gut. A spark of doubt that I instantly mostly extinguished in anticipation of kitchen shopping without herding and wrangling. Stella could hardly wait to get in there, and we had a kitchen to plan! It’s the heart of the home you, know, and duct tape currently holds our decrepit failing one together. We are on the verge of kitchen failure and no bypass will help. Only a transplant from IKEA. This procedure is urgent.

Ominously, the rule was repeated a couple more times as we checked in. Perhaps they noted Stella’s high energy level, they way she could barely stand still to get the prison sticker slapped on her back. Perhaps they knew that the rule was inhumane, and everyone needed to hear it ten times for the grim reality to sink in. Oh, also, sort of an addendum to the main “no jumping” rule: There is no going under the balls. The gist: Sit in the ball pit like you’re an 80-year-old enjoying a warm sitz bath, and you’re golden.

Stella was escorted into Smaland, and we turned the corner to catch a glimpse of her behind the glass. She was already in the ball pit by the time we turned the corner. I saw her get out, look around surreptitiously, and execute a very timid jump. Trouble. But also, not my problem. I noted a small foot peeking up through the balls next to Stella. In that corner of Smaland, she’d find her people. They would likely band together and stage a coup, which is a character-building, free-range activity. So, off we went to look at eco-friendly and eco-unfriendly countertops and high-gloss cabinets and to discuss the merits of single- versus double-basin sinks of different gauges.

In the meantime, we chatted with a couple people. A countertop guy and a kitchen expert. Like, we really conversed with them instead of pretending to listen while fake-nodding and monitoring Stella the climber. Before we could even decide on anything–perhaps we were too giddy to focus–the buzzer was going off and it was the first time in my life I could identify with Cinderella. Our cart was about to turn into a pumpkin! Oh the relentlessness of the clock! We must run, run, run to Smaland before our child turned into a mouse, or something!

The matronly gatekeeper solemnly informed us that Stella had jumped into the ball pit, and been temporarily removed, TWICE. Later, I asked Stella what they said to her, in an attempt to glean some indication of how the staff handles rule-breakers. Are they angry and mean? Are they calm but firm? In response to my simply stated question, Stella dropped her shoulders, head, and voice, looking at the floor and saying slowly and in a resigned tone, “No jumping in the balls.” Fair enough, IKEA. Fair enough.

Some quick googling will reveal that the “no jumping” rule is either new, or not universal. Here is an image, from IKEA’s Swedish site (the home site!), showing a girl at the tail end of what is clearly  a jump into the ball pit! Apparently in the U.S. as recently as 2006, as one blog post I found revealed, it was not only okay to jump into the ball pit, but encouraged by design! Other more recent blogs share tales of woe, stories of reprimand, lamenting jumping ban. For example, see the extremely aptly named post, “No Jumping In the Pit?!?!”

It’s obvious and business as usual, isn’t it? Someone got hurt in the past few years. Hopefully not maimed. Their family sued IKEA, and now no child in our entire country can jump into Smaland’s ball pits ever again. Apparently, a waiver is not enough. Only total censorship of enjoyable activity will do. But does it really make kids safer? Doubtful. Kids are actually not walking bags of rocks. They are smart, and can figure things out. They can learn to watch out for other kids. They can communicate with each other and work out ways of jumping in without landing on each other. The Smaland staff probably have to invest a lot more time and energy monitoring the ball pit, and scolding kids for jumping from what is literally a one-inch height into the ball pit. Oh yeah, I forgot–you’re supposed to “slide in.” Oh wait–there’s no slide. All around, it’s a slap in the face of fun and, frankly, a dumbing down of childhood.

Yes, I’m making a big deal out of nothing. But perhaps I wouldn’t care so much if this rule wasn’t part of a really lame epidemic of risk phobia that results in kids’ independence and activity being severely limited. It’s sad. They are receiving terrible messages over and over again, along the lines of: ‘You can’t handle basic responsibility. You can’t figure this out on your own. The entire world is dangerous–stop moving so much.’ You could say it’s my pet peave, along with packaging. Equally oppressive.

Stella now refuses to go to Smaland. I don’t care how glossy my cabinets will be. Like a flimsy birth veneer, IKEA has lost some of its sheen.

The unnameable, rambling post about mommy blogging, growing up, and all that is sacred about parenting, with a special shout-out to Oprah, Heather Armstrong, and Stephanie Nielson. The end.

Posted on by amberhj

In our pre-Stella existence, with all our disposable income and endless free time, most of which was spent dining out, Cody and I faithfully attended Bumbershoot. My favorite performance by far was Public Enemy, though we saw a lot of big names along with some fabulous unknowns and rising stars. To us, the festival was not just about catching bands but also comedians like Patton Oswalt, who remains a favorite of ours. During one particular show, he spent quite a bit of time interacting and improvising with the audience. He saw that someone brandishing an inflatable sword and, of course, engaged him. The dude answered Patton’s question, then launched into some rambling tangent (similar to this blog post) about medieval history and how he has studied it for years, yada yada yada. Patton listened for a minute or two, clearly amused, and then perfectly delivered one of the best lines I’d heard in a long time, “Save it for your blog, man.”

Don’t get me wrong. I don’t even really miss Bumbershoot. It got too crowded and annoying. Or maybe we got too old. Either way, we’re not hankering for the music festival experience. Not at all. Though, I hope to someday we’ll attend such events, as appropriate, with Stella when she’s old enough to get something out of it. These days, I’m home with Stella every day. I tackle  freelance writing projects during her naps and after she goes to bed. In the little spare time that I have, I don’t really know what to do with myself. So, usually, I waste it online. Brilliant, I know. I bet you wish you thought of that! Really though, I’m used to sitting at a computer for ten hours a day. That’s what I did at work for the ten years before Stella made her grand entrance into the world and our lives. So, I try to cut myself some slack and think of it as a process of breaking old habits. Slowly, I’m spending less and less time on the computer. And it feels good.

Blogging is also an online spare-time activity, but I’ve been reluctant to do it lately. Blogging started out as a way to celebrate and find humor in our parenting journey, and to share milestones and memories with family members, all of whom live so far away. Then Stella had her feeding issues and  the blog mainly became a form of therapy for me and a way of possibly helping others going through the same thing. And I enjoy writing. It’s my profession, and how I am best able to express myself.

Then I saw this National Post article by Christine Rosen, a scathing indictment of the mommy bloggers and so-called “hipster parents” of today.  Rosen claims that many parents today are hipsters, permanently stuck in adolescence. She observes that coolness and self are our top priorities rather than the needs and development of our children. Rosen blames this on the fact that we were the first generation to be bombarded as children by well-intentioned commentary about our uniqueness, how special we are. (Praise without actual achievement, she reminds us, has been shown to undermine self-esteem.) And so, today’s parents dedicate our lives to proving that point right. Our children are left by the wayside, merely pawns in our efforts to feel good about ourselves.

Now, I could hardly be called a hipster. Hey, I’ve only bought TWO (or five or six) things on Etsy.com. I drive a tan Ford Focus. I’ve never, ever been considered “cool” and working at an ad agency confirmed that beyond a shadow of a doubt (though I know am good at what I do). Sure, I’ve made attempts to be stylish–I even wear not-too-tight skinny jeans sometimes–but I’m pretty freaking mainstream in my Banana Republic cardigan. I “given up” Bumbershoot (though, as I said, very voluntarily) and many other activities from my pre-parenting days. Yet, I felt a sting when I read Rosen’s article and couldn’t help but feel it was at least partially directed at me and other moms who find mothering challenging, even painfully difficult at times, and aren’t afraid to say it.

After seeing, in that article and elsewhere, harsh attacks on the most famous mommy blogger (I know, I hate that term, too!), the bold and hilarious and honest Heather Armstrong of Dooce,  I began to feel more self-conscious about blogging. Even a sense of dread. I’d worried about posting our names and pictures online, because you just never know who’s looking. It’s scary. I wish I’d never posted my last name–a mistake made in the fog of new parenthood, I suppose. At times, I noted that I was writing more about my own feelings than Stella’s experiences. I was aware of this, but conflicted–maybe it was best not to share too much of Stella’s life with the world? Maybe I should stick more to my own stuff? With all of this swirling in my mind, I thought about taking the blog down, and did a bit of soul searching. Was there any truth in Rosen’s article? I had to investigate. And I realized something.

I was not a grown-up until Stella arrived. That much is true, Rosen. But I that’s about it.

This will sound familiar, perhaps. Three or four times a day, I get down on my hands and knees and clean up the five square feet of food debris that was left behind by Stella, as if a miniature pasta squall hit that area of the kitchen, and then I wipe down the high chair tray. Then the table in front of her chair, because the edible storm inevitably spills over. This act is one small example of the million little chores/rituals a parent comes to know. And I have to admit, that until recently, I really only thought of it as a drag. A pain in the ass that I would often put off for a little while. That’s not really true anymore. Something has shifted. And I think it had something to do with an episode of Oprah, the one featuring Stephanie of NieNie Dialogues.

Stephanie is a wonderfully positive, sweet, talented, and popular mommy blogger who, about a year ago, suffered severe burns on 80 percent of her body when the small plane her husband was co-piloting crashed. As viewers, we got a glimpse into her daily life, how she struggles with intense pain and can’t pick up and embrace her children, yet she continues to enjoy, relish, and appreciate the big and small tasks of motherhood. My revelation crystallized when Oprah said, to a mother who’d been feeling really resentful and bored by her role as a stay-at-home mom, that making lunch for your child, along with all the other duties of motherhood, is sacred work.

It hit me. I saw the frustration, complaining and, yes, boredom I’ve experienced over the last year in a new way. I’m evolving, slowly and, in my typical style, awkwardly. I am becoming a much less selfish person. I look back at some of my behavior from the days of Stella’s tube feeding, and I feel so sad. I was so worried about her, I couldn’t see straight. Mostly, my love for her and desire for her to be healthy and at her best drove my emotion and reactions. But I think there was a small part of me, I’m ashamed to say, that also saw it as an inconvenience and as a way in which Stella was “not right.” Man, I’m having a hard time holding myself together right now.  I think my panic was somewhat to blame on immaturity and impatience, and because I was unaccustomed to real sacrifice–certainly not the level of sacrifice that our situation demanded. I made the sacrifices. In fact, I went over the top. But I suppose I didn’t handle it very well at times. I’ve just begun to reassess that time in Stella’s life and my own, and there is still more to learn. It’s eye-opening, to say the least.

I saw meal time, until recently, mainly as a source of stress, instead of the privilege that it is. The fact is, I get to be with, eat with, and play with Stella every day, all day. Yes, I need a break now and then to re-charge. And some major financial sacrifice was made in order to achieve this arrangement. But we are *just* fortunate enough to make it work, mainly because before Stella’s birth, we paid down all our debt and saved most of a down payment for our first home (still renting at the moment). Many mothers have absolutely no choice about whether to stay home with their children. I had a choice. So I get to make all of her meals, clean up after her to make sure she lives in a safe, tidy and pleasant environment, read to her endlessly, and see her smile a hundred times a day. (Her smile is a heat source, I swear. We no longer need to use our fireplace.)

Side note: Self-consciousness is kicking in again. This entire post, especially what follows, may come across as cheesy. I know I have a tendency to do that but I can’t help it! I’m not looking for sympathy or anything like that, just expressing myself. God, look what the haters have done to even us unknown mommy bloggers. We can’t say anything without over-analyzing and second-guessing our feelings and writing.

Last week I began to say to myself, whenever I felt reluctant to do my big clean-up during Stella’s long mid-day nap, “This is sacred work.” I said it again and again, and it took root.  Bouncing her to sleep until our backs ached, inserting her NG tube, blogging about her adventures, the tough but ultimately necessary switch to formula, making her favorite pasta and beans, wiping smashed banana off her car seat, changing her poopy diapers… all the work I’ve done for Stella has been sacred. My life isn’t all about me, anymore, and frankly, it’s refreshing. Of course, there are still times when I think I’m going to go mad. I’m not a monk. (Stephanie, though Mormon, may secretly be one, however.) But I look back on all of these experiences with such fondness and from a whole new perspective. I am very lucky. I knew it all along. But now I really feel fullness of this truth.  And yes, I’ll save some of it for my blog.