This is a Book Post

I’ve read exclusively non-fiction for the last few months. This is a departure for me (I likey the fiction), but alas, books about real things are what my spirit craves this year, apparently. The books in this post are heavy on faith, spirituality, women’s voices, and Latter-day Saint history, because my spirit self also wants all the churchy stuff, mkay? Here are some tiny book reviews. Cheers xo

Temple and Cosmos

This book is hefty and written in the rambly professorial verbage of Hugh Nibley, who wrote and taught at BYU for decades on ancient scripture. My interest in the temple–its origins and meaning–has ratched up exponentially this year, which is why I delved into this behemoth. I learned a lot about the ancientness of temple ceremonies, and about the pervasiveness of their symbols throughout history. The last few chapters aren’t really about temples, but are various papers tacked onto the book. These didn’t interest me, but the rest of this tome was pretty fascinating. Nibley’s daughter Martha, said he abused her during her childhood. This is distressing information, which gave me some cognitive dissonance because while he wrote astutely about the deepest mysteries of my faith, he may have also been a monstrous pedophile. My son and I argue over Michael Jackson for this very reason. He says MJ’s music is amazing. I say I don’t want to listen to the art of a child predator. Only you can decide how to proceed regarding this landmark book and it’s questionable author.

Saints, vol. 1

This is the first in a series of four volumes recounting the history of The Church of Jesus Christ of Latter-day Saints. The Church is making an effort at greater transparency in relating some of its more distasteful historical events, and this book reflects that stance. It doesn’t dismiss or justify uncomfortable facts, but it does present them in context. A group of writers worked with Church historians on the book, and while I wouldn’t say it’s a gripping page-turner, I enjoyed reading the sequential unfolding of the fledgling Church. I learned a lot. Some of it made me feel icky. Much of it was faith-promoting. For me, Joseph and Emma Smith became real people, and this humanizing discussion gave me empathy for them. I will def be reading the next volume, which comes out in February 2020, and which will obvs be about the trek West, at least in part.

Doctrine and Covenants Encyclopedia

This is a really thick reference book by Hoyt Brewster which cites scripture and prophets as it expounds on people and terms found in the Doctrine and Covenants. I intended to read just a few sections on specific words of interest to me, but ended up reading the entire encyclopedia like a novel because I’m weird and it contained a bunch of hidden gems.

A House Full of Females

Harvard history professor and Pulitzer Prize-winner Laurel Thatcher Ulrich wrote this really quite readable book about the practice of plural marriage in the early Church. When this book was released in February 2018, I decided I wasn’t in a place to read it without filling with rage. Somehow, I was in a better place this spring and found this book immensely informative and thought-provoking. Again, I learned so much from this discussion on a practice which, while believed to be eternal, exalting, and divinely-mandated, also at times resulted in incredibly messy lives and situations when practiced by regular humans. And here we reprise our high-maintenance pal, cognitive dissonance.

Not Yet

I heard about this book on the Mormonland podcast and couldn’t order it fast enough. It’s written by Jeff O’Driscoll, a veteran emergency room doctor, who has vast experience with both death and near-death experiences. He has a spiritual gift where he physically sees people who have died, as clearly as he sees the living people in the room. He doesn’t attempt to persuade skeptics, he simply tells his experiences, which span decades in the ER. I devoured this book. I am obsessed with NDE accounts because I believe every last one of them is true and as a body, they inform us regarding our own mortality and our eternal spirits.

At the Pulpit: 185 Years of Discourses by Latter-day Saint Women

Edited by Jennifer Reeder and Kate Holbrook, this is a collection of women’s discourses throughout Church history. It is a testament to the strength of women as preachers, leaders, and disciples since the Church’s restoration. Perhaps as interesting as the discourses themselves are the biographies of the women preceding each chapter, and the copious and rich textual notes at the end of the book. I read every single word and learned so effing much. I finished this work and FELT the power of women who serve and study and learn and teach. The more recent talks appealed most to me, probably because their current topics and language spoke to me exactly where I am. If you read it (it’s free online on the Gospel Library app under “Church History”), these are my favorite chapters: “The Prayer of Faith” by Drusilla D. Hendricks, “A Latter-day Saint Theology of Suffering” by Francine R. Bennion (this one is a REVELATION), “The Unknown Treasure” by Jutta B. Busche, “Decisions and Miracles: And Now I See” by Irina Kratzer, “Knowing Who You Are–and Who You Have Always Been” by Sheri L. Dew, and “Our Father in Heaven Has a Mission for Us” by Judy Brummer (I personally found this one super inspiring).

The Witness of Women

This collection of firsthand accounts of women involved in the Restoration of the Gospel of Jesus Christ is edited by Janiece Johnson and Jennifer Reeder. I’ve had a harder time slogging through this one, probably because so much of it is written in the embellished and wordy syntax of the nineteenth century. I also find myself hungry to move beyond the nascent Nauvoo Relief Society and well-known female pillars of the early church like Eliza R. Snow to the many many many multitudes of contemporary women who also possess great faith, fascinating life stories, and the ability to inspire and lead.

Crossings: A Bald Asian-American Latter-day Saint Woman Scholar’s Ventures Through Life, Death, Cancer, and Motherhood (Not Necessarily in That Order)

This is a memoir by Melissa Wei-Tsing Inouye who has lived a fascinating global life with her husband and four children. She is incredibly accomplished and yet writes relatably about living in Taiwan as a missionary, Hong Kong as a young mother, and now Auckland, New Zealand as a university professor. I’m only part-way through, but I already love her and am immersed in her voice and her story. I also heard about this book in an interview with Inouye on the Trib’s podcast Mormonland, which is now driving many of my book purchases.

A Post, Wherein I Write About Not Writing

I’ve been thinking quite a lot about this blog over the last few weeks of NOT writing in it. My thoughts have included:

  • I am grumpy about this blog.
  • Said grumpiness stems from feeling a sense of duty to write here, when I don’t want to be vulnerable and post things about myself and my family all the time.
  • Also, I am le grump because God told me to have this blog (oh hi, pressure) and it has become a burden to me.
  • Grumpiness aside, I was telling someone I had just met that I write things on my blog. They asked me what I write about, and without missing a beat, I said “special-needs parenting,” which I realized isn’t the complete truth.
  • The special-needs story is part of who I am and what I talk about, but it’s ancillary to the big headline, which is that…
  • My faith has saved me. Also…
  • Jesus saves me daily. And…
  • Jack, Jeff, and my other boys are my cohort of spiritual companions while we sojourn in a mortal realm. So basically…
  • I write about How to Survive Your Life in the sense that you have to find truth and seize hold of it and pursue it through all challenges. In sum…
  • For me and my people, this is the truth: Jesus is the means to spiritual survival, to healing and progress, and to hope which ultimately looks like peace.

After having this realization, I felt two conflicting emotions: 1) relief at overtly acknowledging this, and 2) weighed down by the idea of being that person who always writes about sacred things and spiritual journeys.

So.

That’s where I am, reader. I don’t need reassurance, and I don’t blame you if my tormented introspection is getting you down and if you want to go somewhere else to read really anything else. I get it.

I’ve stepped away from writing, my mind and laptop lying fallow for a time.

And I’m still in this dormant phase, apparently, because this post does not contain a brilliant story or insight for your reading pleasure.

It’s just me checking in and being real, even that means I’m real boring.

Me, Identifying with Sariah When She Complains

I’ve crawled out of my sick-cave to write down a couple of points which have stuck with me since I re-started reading the Book of Mormon again this month.

Before I begin, allow me to pay homage to the divine gift which are antibiotics. Better living through chemistry, friends. I’ll drink a Diet Coke to that, and I’ll pour one out for my dad, who is nodding his silent agreement right now, I’m pretty sure.

While I’ve been sick, I’ve spent a great deal of time reading about the restoration of the Gospel and the early days of the church, which is A TRIP, people. And, because I finished reading the Book of Mormon recently, I also undertook that familiar Latter-day Saint U-turn move of immediately beginning to re-read that book of scripture which is the keystone of my religion. It was during my reading of the familiar stories of Nephi’s family that something new stood out to me.

In 1 Nephi, when Nephi and his brothers are gone, attempting to recover the ancient records they are commanded to retrieve, Sariah, their mother, snaps. Do we blame her for losing her mind? I personally don’t, but let’s let Nephi explain, “For she had supposed that we had perished in the wilderness; and she also had complained against my father, telling him that he was a visionary man; saying: Behold thou hast led us forth from the land of our inheritance, and my sons are no more, and we perish in the wilderness.”

At this point, I thought to myself, “I too would feel some righteous indignation. She has followed him into the desert for year after interminable year, and now her four sons are possibly dead. But, I forget what happens here. Is Sariah chastened for not blithely following or trusting her husband, the prophet? Because ugh. If that’s what happens next, I’m going to lose my mind a little bit and possibly throw something.”

Amazingly, that’s not what happens next.

This is what happens: Lehi speaks to Sariah about the undeniable visions from God which compelled him to lead his family into the wilderness and into the dangerous undertaking of recovering the records and sailing to the New World. “And after this manner of language did my father, Lehi, comfort my mother, Sariah, concerning us, while we journeyed in the wilderness up to the land of Jerusalem to obtain the record of the Jews. And when we had returned to the tent of my father, behold their joy was full, and my mother was comforted.”

This was the first time ever in my recollection that the middle-aged woman of the story, and her emotional state out there in the wilderness, stand out as a key part of this retelling. The point of these verses is Sariah’s comfort.

God could have struck her down with boils or lightning or serpents for complaining and doubting. Instead, God compelled her husband, the prophet, to empathize with her in her trauma and sorrow. He gave Lehi the words to comfort Sariah, and then he returned her four sons safely to her.

The only woman in this household of males needed comfort, and God provided it.

This little vignette, which really is ancillary to the story of her sons escaping death at the hands of Laban et al, spoke to me because it proves that our Heavenly Parents know the hearts of women. They understand women and they care about how they feel.

Here she is, the wife of a prophet and mother of another prophet, feeling bereft and helpless. And yet, Sariah’s emotional state could’ve been written off as not the point of the story, or beneath our notice because she’s a woman.

But it was important enough to make it into the modern translation of an ancient book of scripture. To me, this says, that even when cultures or traditions do not afford equality to women, our divine parentage does.

The world is rife with abuse and sexism, but those things won’t exist when Jesus reigns.

The Gospel in its purest, truest form isn’t sexist, lads. I needed to know this for myself, and I left those verses of 1 Nephi feeling God’s love for everyone who has ever felt marooned in the wilderness, sidelined by the complexity of life, and defeated by circumstance.

Waning May; Tiny Letters

Dear Reader,

I’m still here, just not here, on this blog much, which you likely already noticed. I don’t have much to say, currently. This is how one loses blog readers, I am told. Reader, tell that to my psyche which is just quietly doing its thing and can’t be bothered to write stuff.

Dear Month of May,

You are rainy this year, and cold. You are full of doctor’s appointments and therapy appointments, and specialist appointments for my children. You are rolling forward like a freight train to the end of the school year. You are a beautiful month. You are ephemeral. You evaporate into the ether before I feel I can fully enjoy your beauty. Ah, May. You’re a slippery, lovely thing.

Dear Giant Church Doctrine/History Books I am Currently Reading,

What is it with you guys and your old-paper-smelling ways that sucks me in? Why haven’t I cared about you before? Did you always intend to just sit there fallow on the shelf until I had another intense spiritual journey, and then you felt you’d make your move? Also why am I treating ye olde inanimate objects like sentient beings? I’m currently reading three of you bad boys right now, for a combined total of like 1800 pages with copious end notes. And dang it all, Giant Church Books, I’m enjoying you. Does this mean I’m boring?

Dear Early Church History,

You are really a lot to take in, you know? I’m inspired, but also aghast at so much of the difficulty that transpired during your watch. And I just ordered Laurel Thatcher Ulrich’s newest book today, so I’m clearly not ready to be done with you. And no offense, Early Church History, but I am really glad I did not live when you were roaming the earth. I’ve always felt I would’ve made an awful pioneer, what with my love of indoor plumbing and hair product and automobile travel and NOT being attacked by mobs. Blessed, honored pioneer, indeed.

Dear Soda,

My back is once again telling me I need to let you go. But I love you, soda. And I would like to ask the universe if I am not allowed to have ONE vice. Am I? Allowed one vice? (The universe is telling me “sure, but your back will hurt, so yeah”). So, dear crisp nectar, I’m not giving up on you. I’m just backing away slowly, a bit.

Dear My Sons,

We’ve had the talk about summer, and the routine, and the expectations. We will again have this talk, possibly on repeat. Let’s all stay calm and not fight, okeydoke?

Dear Parenting,

I’ve never been dismissive of the wild ride you’ve taken me on. It took you some time to break down that entitled naivete I exhibited in the beginning, but we got to this place where I accept that you are this insane melodramatic rodeo clown entity in my life. And you aren’t languishing, dear dear dear difficult Parenting, even as the guys get bigger. I found that out yesterday as we found a new therapist for a certain kiddo who doesn’t want to go to therapy or be different or have autism. You are really something, Parenting. I’m not going to say what you are, but you really are SOMETHING.

Dear Freezing Cold & Wet May Weather,

I get that you do what you want, but I’m just going to come out and say it. You’re kind of a bummer.

Dear Me,

I like that as you enter the more fully entrenched years of your forties, you are embracing it by being you and liking it. Exhibit A: your bangs. They’re cool because you think they’re cool, and you’re like, “look at me I’m fabulous bangs bangs bangs.” Exhibit B: You’re less tuned into the toxic messages of diet culture and consumer culture and the you’re-not-good-enough culture of capitalism. In this house, we do not vilify carbs or succumb to the insidious idea that we are defined by our possessions/looks/hobbies/travel. Come to my house, we happy here. Exhibit C: Your politics, which we won’t talk about here, but which have evolved and which are the result of more critical analysis and thought than before. Good job, you.

Dear Thirty Minute Nap I Took Today,

I love you. You saw me and you gave me exactly what I needed.

Hey May

I submitted my grades yesterday, thus wrapping up another semester of teaching writing to university students. I realized that during every single semester that I’ve taught over the last four years, events in my life have presented some variation of a huge, hulking challenge that has threatened to derail me.

In other words, there was never just teaching. There was also my life going up in differently colored flames due to one thing or another.

I have to imagine that the same is true for my students. No one goes to school (or work or anywhere) in a vacuum. We carry our hardships within us; they are part of the fabric of our being. It’s something to be aware of, and is a great justification for kindness, yo.

Anyway, as I reflected, I pulled out my phone and made this cheery little list of the things that have (for me, outside of class) characterized each semester for years:

  • teaching while Jack lived at home and was literally beating up me, his brothers, and the appliances/windows/sinks/toilets/whole house
  • teaching while placing Jack into residential care
  • teaching while grieving
  • teaching while my dad was dying
  • teaching, again, while grieving
  • teaching while Jack was being hospitalized in a neuropsychiatric unit
  • teaching while Jack was being kicked out of his group home placement and transferred to another one, three hours away
  • teaching while handling the sensory issues and neuroses of various other children, including but not limited to being able to: eat food, go to school without melting down, be flexible and less rigid about ideas/routines/situations, and be responsible enough to handle a bit of independence
  • and, inexplicably, teaching while undergoing an inward spiritual awakening that exceeds everything I’ve ever learned before about spiritual things

Occasionally, in the midst of a semester, I’d think to myself that it would be really kind of amazing to not have some outside tragedy happening at the same time, like clockwork, predictably, all the time.

Now I think I’m at a point of accepting that a) apparently this is how my life works, and b) God has seen me through each semester plus tragedy so it’s all going to work out somehow, someway.

I’ve written extensively in the past about each of the things on the above list, except for the last bullet point. To clarify, I have written continuously over recent months about the intense and consuming awakening of my spirit, but I haven’t shared it. This is not because I’m hoarding the things I’m learning. It’s because I’m not at liberty to share them.

I’m letting the spirit lead out on this one. And currently, what I’m getting is this: be quiet and listen.

Inward things aren’t visible, and yet they’re real. This is an education.

At some point, I might be at liberty to talk about it. For now, I’ll just say that I’m learning to be more attuned to frequencies which aren’t spoken aloud. If this blog seems a little quiet and reclusive, this is why.

So in regard to the semester which has just ended, my non-teaching life wasn’t facing major tragedy (yay) but it was a time of major change.

To end this (possibly unsatisfying post), here are a couple of other observations courtesy of moi.

  • I love my job. So much. Working with a rotating bunch of undergraduates every semester is delightful and I love them. Teaching is such a gift in my life, and knowing my students and former students brings me happiness. They are amazing humans.
  • In the seven and a half years since Truman’s birth, which was the unwitting beginning of the worst years, I’ve been to the depths and back. But if I hadn’t experienced the trauma of a preemie, two more kids with special needs following Jack’s diagnoses, living in Poo Town, and the onset of puberty making Jack super violent, I wouldn’t have come to the point of complete submission to God’s will that I did. Perhaps I’m possessed of a prideful nature. Maybe we all are. Whatever the reason, I needed to have my life leveled in order for me to be ready to receive the big lessons my Heavenly Parents were waiting to give me. So, I’m grateful.
  • Through recent experiences I am learning to understand my children better and wow, they are remarkable people. Maybe this is the point of all this–knowing my people for who they really are.
  • Change is possible. Growth is possible. Miracles are real, and my life is Exhibit A regarding this.
  • I love cookies. Frosted sugar cookies. Big, chewy chocolate chip cookies. Chocolate fudge cookies from Sodalicious which are basically brownies pretending to be cookies. I love them all. This is neither here nor there. It’s just the truth. I stan the cookies.

Wednesdays at the Temple

I spend the better part of each Wednesday working as an ordinance worker in a temple of the Church of Jesus Christ of Latter-day Saints. It is busy and tiring and has a really steep learning curve, but it’s also pretty ding-dong amazing.

The temple is the MOST instructive place on the earth, and has taught me a few things, aside from the mega-insights inherent in the sacred ordinances themselves. Read on if you’d like to hear about my non-sacred-but-still-valuable lessons from being in the temple a whole bunch.

People With Special Needs Go First

Obviously this is the first thing I picked up on being in the temple. I mean duh. This is the sort of thing my parenting life has conditioned me to notice. And when I saw how the temple handles anyone who has special needs of any sort, I kind of wanted to stand up and loudly clap (except just in my mind, since the temple is a quiet place).

This is how they do it: workers are trained to watch for people who need accommodations or additional help, whether it’s due to physical limitations, first-time temple attendance, or speaking a primary language other than English. The workers ask the individuals how we can best help them. Then, those who help with the temple transitions are made aware of these people and their needs, and are enlisted to step in and assist.

Here is the part that I really love: when it’s time to complete the ordinance, THE PEOPLE WITH SPECIAL NEEDS GO FIRST.

Guys. This is not a drill. No one makes the person with the special need feel “other” or “less than” or even like they’re causing problems for everyone else. They don’t have to wait in shame for all the “typicals” to go first. Instead, everyone else waits like 90 extra seconds until those who need a bit of extra assistance are set.

As Jack’s mom, I find this approach so completely beautiful. Jesus (and his army of proxy ordinance workers) sees the extra needs and rushes to meet them. And the people with distinct needs come first, before the ninety-and-nine, if you will.

We’re all occasionally the figurative “black sheep.” The temple teaches us how to approach and help each other when we are the one needing more assistance than everyone else. Basically, if you want to do as Jesus does, here’s how we can do it: we notice, we ask how we can help, and we offer that particular sort of help immediately. Can the whole world implement this approach? I mean seriously. K thanks.

A Culture of Positivity Accomplishes A Lot

I am currently being trained by two women who are veteran temple workers and basically extraordinary leaders. There is SO SO MUCH to learn in the temple, and Sister M and Sister B are making it joyful because they are patient, thorough, and incredibly supportive.

I’m seeing through this experience of memorizing the lots and lots and lots of words of the ordinances that people flourish when their mentors treat them with encouragement and love. There is some sort of magical, invisible strength that crystallizes when people provide a structure of real support in this way.

It’s essentially counterproductive to approach leadership in any other way. Sorry guys. I don’t make the rules.

I love my trainers and my fellow trainees, and we are just a little sisterhood of the traveling words of encouragement.

An Orderly Place is a Peaceful Place

Today we were learning about how to handle all kinds of exigencies—various rare situations which aren’t likely to arise, but if they do, there is a plan in place and now we know what to do. At one point, I commented, “This covers everything. It’s so organized,” to which my friend Carrie replied, “It’s a house of order.” Hahaha, exactly.

I think the lesson in this for me personally is that being mindful of possibilities and issues, and systematically preparing for them doesn’t make you boring and worrisome and predictable. It makes you peaceful, because you’re ready for whatever wild things come your way.

“Behold, mine house is a house of order, saith the Lord God, and not a house of confusion.” Doctrine & Covenants 132:8.

This idea speaks to the concept of finding clarity in the calm, steady, peaceful, and enlightening habitat of the temple. Enlightenment is the opposite of confusion. God creates order, intelligence, and possibility, and gives us an open-ended invitation to come, sit with it, partake of it.

There is Power in Internalizing Sacred Words

Did you ever have to memorize a Shakespeare sonnet or a poem in school? I did, and now, all these million years hence I can still recite The Bard’s Sonnet 29 and Robert Frost’s “Stopping By Woods on a Snowy Evening” on command. Thanks, Mrs. Joyce Baskin, Honors’ English teacher of champions. Those lovely lines of verse are stuck in my memory.

I’m finding that the act of committing the words of Jesus Christ to memory has helped me think about them deeply. I’m examining the language and the symbolism. The promises afforded in the temple ordinances are spoken with gorgeous imagery, and now that they are lodged in my brain, they’re with me for good. I find myself mulling them over and drawing strength from them.

Memorize. Jesus’s. Words. Yo.

They’re powerful and they will build you up.

Revelation is Personal and Faith-Driven

Most of what I have learned in the temple isn’t spoken out loud. It happens internally when I’m in a quiet, entreating, devotional state of mind. It happens because I’m in a holy place and I’m asking, then listening.

This is the beauty of truth.

God will reveal it to you when you’re ready for it. It’s a personal matter. It doesn’t have to do with anyone else. It’s individual, and it happens in response to our belief that it will happen. This isn’t to say that understanding comes all at once, just because we want it to. Humans learn things line upon line, and in my experience, sometimes there are years between each of those lines.

I dwelt in a place of relative darkness for about a dozen years as Jack and I grappled horribly with the limitations and difficulties of severe disabilities. In recent months though, I’ve seen the complete accuracy of this verse of scripture, “That which is of God is light; and he that receiveth light, and continueth in God, receiveth more light; and that groweth brighter and brighter until the perfect day.” Doctrine & Covenants 50:24.

Light attracts more light.

Humility invites more instruction.

Understanding welcomes greater insight.

And it all turns on the hinge of the Holy Spirit speaking to our individual spirits.

More Unsolicited Advice

A few weeks ago, I wrote a post offering advice on navigating the special-needs parenting journey, which seemed to resonate with a bunch of people. It didn’t feel entirely finished, so I’m going to write a bit more. As always, these anecdotes may not apply to you or your situation. But they are what I have sincerely learned for myself in the hinterlands of disabilities parenting. Cheers, darlings.

Don’t Go Too Far Into the Future

It’s easy to panic about the future when you have a child who is different. Perhaps the outcome of the child’s condition isn’t well known. Maybe there are a lot of unknown factors. People have asked us all through our son Jack’s life what his prognosis looks like: would he ever speak, when would he begin reading (cue the eye-roll), when would he stop acting out, how big would he get?

After diagnosing Jack, our geneticist told us to consult the internet and see what we could find from other parents, because there were so few research studies at the time about M-CM Syndrome. He didn’t have much concrete information about the future. At every appointment, he asked us how we could educate him about the syndrome. (Note: going to a doctor who wants you to teach him about your kid’s rare condition is the actual worst and I hated it so much I can’t even #flamesonthesidesofmyface). Basically, the answer to everyone’s questions about Jack’s future, was “We have no idea.”

Roughly 88% of all my existential meltdowns over the years have happened when my mind has gone all worst-case-scenario over our family situation. Let me repeat, I was not necessarily falling apart because things were actually catastrophic; I was falling apart because I could foresee things getting much much worse, and my imagination turned toxic.

And so, when Jack was barely a kindergartner, I made a pact with myself that I wouldn’t think about the future. I allowed myself to think a week ahead, a month ahead, six months ahead. But that was it. I could only stew about and make plans for and contemplate things in the foreseeable future: Early Intervention, specialist’s appointments, Structured Playgroup, visits to grandma’s, and trips to the gardens or a museum or the zoo.

I DID NOT LET MYSELF THINK ABOUT WHAT JACK’S LIFE WOULD BE LIKE BEYOND THAT.

I couldn’t. It was terrifying. And yet, when I wasn’t trying to fill in the specifics with my own limited understanding, I retained an unformed but palpable sense that things would be better someday. This leads me to my next point.

Hold Onto Hope

Yes, it’s a cliche, I KNOW.

But it’s vital to your own health and your family’s ability to weather their challenges. Hoping for better days is what compels us to engage with the painful things. We face them with a sword of belief–that we can improve some things, and that we can find a place of peace and acceptance.

I didn’t know how things would ever get better. They were simply so bad for so long. But on a spiritual level, I knew somehow they would improve. In my mind’s eye, I could SEE us in later years. I could see us happy and calm, with Jack in a good place where we would visit him, and where he got the care he needed.

This is what I held onto for a long time as we worked through years of therapy and ear infections and Code Browns and behavior problems.

My Take on Inclusion

Someone asked me for my thoughts on the concept of inclusion when I wrote that other post, so let me speak to this idea.

I used to fear too much intermingling of neurotypical kids with neurodiverse kids (meaning MY kids!) It just seemed so fraught with difficulty. Jack would knock down kids at the playground who were in his way. Preschooler Charlie would say weird things and have tantrums over something as small as a fire truck’s siren somewhere in the neighborhood. I just got so tired of always explaining my kids’ differences to everyone.

At one point, I wanted to fashion a sandwich board to wear around in public that said something like: My kids have autism. They are overwhelmed. But they want to do fun things in public, too. We don’t need advice. We are doing our best. Have a nice day.

Over the years, I’ve become more relaxed about plopping my family with our incumbent issues in the midst of gatherings of “typicals” everywhere. I don’t bother explaining the hyper-focused comments about World War II history that Charlie throws into literally every conversation. I don’t worry about what people may think about my kids’ rigidity with routines. I’m unconcerned with anyone who may be inclined to be annoyed or confused at my sons’ delays with reading, toileting, socializing, etc.

It just doesn’t even bother me, anymore. My kids are the ones with special needs. I don’t need to protect everyone else from exposure to people with differences. Those people are perfectly capable of observing and learning and accepting, which they generally do.

Charlie is now mainstreamed at school for much of the day, and has made good friends. He’s quirky, but he’s also super charming, so people like him.

Truman doesn’t qualify for an IEP. He’s academically ahead. And yet, he had to be literally dragged into his first grade classroom every day for six month of this school year (by me, in my pajamas, HOO BOY). His classmates saw a fellow student who was having a harder time adjusting to the sensory input of a new grade level and, remarkably, they didn’t judge him for it. They just looked at him, said hi, and carried on with their day. His teacher is an ally when it comes to giving Truman time to go jump around or play with a fidget toy in the cubby room when his internal engine is revving way too fast. She also lets him sneak the crackers in his backpack to keep his tummy full, which solves 94% of his behavior problems.

At the same time, I am unwilling to expose Jack to the general population, for everyone’s safety. Jack has always been an outlier, in terms of disability. He requires the MOST restrictive environment, which is the opposite of what people strive for. But it’s what he needs, and when his needs are met, he’s a peach. The behaviors fall away, and Jack lives a happy, peaceful life.

Accept That Everyone is Doing Their Best

This includes you. And your child. And the woman in the grocery check-out line who asks, “What’s wrong with him?” while peering into your toddler’s stroller. And the school administrators who have a different vision of what your kid’s education should look like. And the parents in the children’s hospital waiting room who keep staring during your nonverbal preteen son’s outbursts. And that one church leader who told you if you just tried a little harder, you could fix all your family’s problems. And the kid who saw Jack tantruming and said to your neurotypical son, “I’m glad my brother isn’t crazy.” And the people who send you “inspirational” articles about people with autism being “cured” (hello, red flag) or even just living independently or going to college (things that surely are inspiring, but which will never happen in this life for many people with disabilities).

When I started to see the people around me as flawed, but intrinsically good, I managed my expectations better. While many comments still hurt, I began to stop holding onto them. I kind of just watched them fly past me like weakly-launched arrows, falling benignly to the earth a short distance away.

I don’t know how I got to this point. I think it happened when someone said and did something very hurtful to me. I wanted to tell this person off and give them a taste of their own medicine. I ranted in my mind, practicing my verbal jabs for when I saw them and told them what I thought of their behavior. But here’s what actually happened. I saw this person, and while I felt so angry, God audibly said in my mind, “I love them as much as I love you.”

This is what did it. It quelled my fury. Seeing people as God sees us diffused my anger as I deeply considered that we are all beloved.

It’s what I wanted for Jack and my other boys, too. They could be really difficult, too, but I wanted people to be forgiving and loving to them anyway. I began to see that we all need understanding and patience. It’s the human condition.

Avoid Thinking too Generally

When I think about all the families struggling with autism or seizures or bipolar disorder or complex medical conditions, I feel overwhelmed and depressed. How can the world handle so many people who face so much hardship? How will all the aging kids with autism find care as adults? How can so many beleaguered parents face impossible situations into perpetuity? How, how, how, how, how.

And when I get like this, nothing good comes of it. It’s really simple to go down the rabbit hole of worry and defeatism when you think in global terms. My solution has been to think locally.

I’m not smart enough or powerful enough to solve everyone’s challenges. But I am able to look at the ways God has directed me to always find the right solutions for my children’s needs. We have always found our way through, even it if took time and tears and effort and lots of detours.

I’ve been rather overwhelmed at times by the suggestions from Truman’s Occupational Therapist, who has urged me to create tactile bins, establish a reward/incentive jar with pom poms, create a visual schedule of moving or calming activities, establish a supply closet of sensory activities, expose Truman to organized sports, spend time building forts/ropes courses/obstacle courses, and implement a system when Truman learns to take responsibility for assessing his own inner engine.

You guys, pom poms and rice bins and ropes courses are way way way outside my wheelhouse. My entire being bristles at the idea of crafting visual schedules and forcing Truman, the biggest homebody who ever lived, into sports. These ideas make me want to retreat to the woods and never emerge.

But I’m a grown up, so at some point I took a deep breath, ate a Sodalicious fudge cookie (or a pink sugar cookie, I can’t remember), and decided to OT the heck out of Truman’s life in my own way, which looks like this:

  • My version of tactile bins is asking Jeff to pick up some bags of sand to spruce up the sandbox in the backyard.
  • My version of pom poms in a jar is reminding Truman that if he does his jobs as soon as he’s asked, he can earn more time playing with friends or electronics.
  • My version of sports is going for a walk with Truman blazing a trail ahead of me on his scooter. It’s also inviting the neighbor kids over and shooing them all outside to swing and jump on the trampoline.
  • My version of a sensory supply closet looks like a few tubs of playdoh, a couple games I ordered from Amazon, all the living room throw pillows and blankets, and the bathtub. It’s enough and it works.
  • My version of an evolving schedule for Truman is having a list of ideas on my phone, and asking him to occasionally assess his inner engine and make choices about how to either calm it or redirect its excess energy.

I should write a (very short) book titled, Occupational Therapy for Dummies.

This is all to say that thinking broadly and idealistically gets me down. But thinking in manageable, incremental pieces, which happen to also be simple and convenient, makes handling Sensory Processing Disorder do-able.

Another vignette about thinking locally, not globally is something I did last summer. I felt inadequate at the scope of suffering among my special-needs parent friends. At the same time, I had a sense of survivor’s guilt at not facing the same level of struggle I once had and which they were still battling every day.

My “local” effort was to pick someone close by who I could help in a meaningful way–in a way that would have meant so much to me when Jack was little and living at home. My husband’s cousin lives near us and, last summer, was quite pregnant while coping with the vicissitudes of summer (no school or respite care) for her special needs son. Also, she was working part time and also had a tiny yet opinionated toddler and an older daughter who wanted to get out and do all the things all the time.

So I watched her kids one morning a week, which was extremely fun for my little boys and no biggie for me whatsoever. I mean seriously, there were no Code Browns and no one was throwing the remote at anyone else’s head. Easy peasy. We played in the sprinklers, we drew with chalk, we watched The Muppets, and we went nuts with stickers, markers, and Oreos (not all at the same time. It was honestly super easy and enjoyable for me. But for these kiddo’s mom, it was the day she told me she looked forward to all week. She could get things done and catch her breath and she knew she would survive.

I guess the moral of this story is, Jack taught me how to see someone in need and how to offer exactly what they needed. He’s the real MVP. Thanks, Jacky boy.

Focus on Sleep

I’m a big believer in the ability of sleep to heal. All of us do better, think better, act better, and feel better when we are deeply rested. And while sleep can be elusive when you have a special-needs child, it is possible to find it in various iterations. But it has to be a priority.

Nap times and bedtimes were sacrosanct during my kids’ early years. Part of this was for them. Mostly, it was for my sanity.

Forgive People When They Say Stupid Things

People often said irritating things to me when they learned of our parenting struggles. They’d hear about the Code Browns and tell me how one time their kid had a diaper blowout that stunned and horrified them. Or when my kids were irrationally picky or having meltdowns, they might tell me that their child did that sort of thing, as well.

And while it felt like they were invalidating all my pain by comparing their typical child’s one-time poop event or age-appropriate occasional tantrum with our daily pathological struggle to simply exist, I could see that they didn’t mean to hurt me. They were actually trying to connect with me and empathize, even though their efforts were ineffective and misguided.

Sometimes people don’t know what to say, and so they say something wrong. I try to forgive these gaffes by focusing on the person’s intent, rather than their actual words. Are they trying to understand and care about us? Then that’s what I hold onto.

There inevitably will be people who say ridiculous things that make you want to turn and walk away and keep going until you get to the airport and then board a plane for anywhere that isn’t where that person is. But for my own sanity, I don’t let myself hold onto those comments. Clueless comments are just that–clueless, meaningless, not worth fretting over. Those folks don’t know the reality of your life, so go ahead and let their uninformed opinions go. You know what your life is actually like, and so does God. This is enough.

Do the Needful

My husband says this phrase when he’s trying to get our boys to man up, be responsible, and follow through. When things get hard, when you don’t know how to proceed, when you’re really weary–do the needful.

To me, this means choosing to a) prioritize, facing the most pressing thing first, and b) power through the ugly things because life be like that sometimes, and because then you can move onto something nicer.

Just do what needs doing. Don’t do everything. Do the important thing. Do the pressing thing. Do the difficult thing. But do it one piece at a time. It’s the opposite of doing everything right now, and perfectly.

It’s a patient, neutral, unemotional approach to facing chaos and difficulty.

This is a lot of advice that nobody asked for. So. Much. Advice. Yikes.

Now that you’ve read this giant post, you really deserve a crisp Diet Coke. You’ve earned it, baby. Go on, treat yourself.

xoxo

My Campfire of Faith

A friend asked me to speak today for (wait for it) TEN MINUTES of her Relief Society lesson. Because I love her a lot, I said okay. First, we watched the talk Campfire of Faith by Elder Gerrit W. Gong, and then I was instructed to respond to it with my personal spirit-led insights. It was an exercise in hearing what the spirit is telling us, beyond what is being said out loud. What follows are a few of my notes, but I actually didn’t say any of this during my remarks in the lesson haha. Whoops. This is some of the stuff I didn’t say, but which nevertheless is real. Anyhoo, happy Sunday.

Jack’s childhood was the most difficult time of my life. Period. It was simply so hard. In case you haven’t been reading this blog for a hundred years, I can update you on a couple of the highlights: basically we couldn’t take Jack places because he was overwhelmed and had difficult-to-control behaviors (this made us hermits, basically), and our lives were characterized by Jack’s toileting issues. Jack created hazmat situations on the daily, that we referred to as Code Browns. He was a regular Poo-casso in his bedroom, in the family car, in the hallway, in the living room, and (once) on the school playground, blech.

As he got bigger, the Code Browns got worse. We consulted every expert with no success. The psychiatrist, the behaviorist, the pediatrician, the gastroenterologist–they all wanted to help, but nothing worked. Ultimately, one doctor told us that our best bet would be to never ever ever ever leave Jack alone, because that is when he created his poop masterpieces. This specialist didn’t think this was great advice, but it was all she had to offer. But never leaving Jack unsupervised was impossible. We had what felt like a thousand children, all with difficult needs. We had to make dinner and clean it up, buy groceries, do laundry, earn a living, drive people places, and you know, sleep sometimes.

A few people have messaged me in recent months and asked how we turned these toileting behaviors around. They know someone going through a similar thing and want to offer helpful advice. My answer is disappointing, but honest: we never did turn those behaviors around.

Jack’s bowel movements and bathroom activities were the stanky center of my mental and physical energy for more than a dozen years. We did not have a single day when they did not control us. Christmas Eve, Thanksgiving Day, my birthday, his brother’s baptism day, the first day of school–all of these were just another day in the life of Jack’s Code Browns. There was no break.

Jack has lived in a group home for almost two years now. The last time we saw him, I asked his caregivers how the toileting was going. Specifically, I wanted to know if I could get Jack a rug for his bedroom floor, to make it more cozy. Or was I just asking for a destroyed rug? The staff responded that Jack has gone from having daily toileting disasters (like when he lived at home) to maybe having an issue twice a month. We all agreed this was completely terrific! A miraculous improvement!

Then I learned why things have changed in such a positive direction. The staff informed me that whoever is on the graveyard shift pulls up a chair by Jack’s bedroom door at 5:30 AM and listens for him to wake up. The second he stirs, the staff prompts Jack to the bathroom and thus avoids the disasters of yore.

This response floored me. It showed me that Jack’s mental delays and related toileting tendencies have in no way been suddenly cured. The tendency to do his business on the floor hasn’t ebbed. He’s the same sweet little Jacky who would happily create Code Browns whenever he got the chance.

What has changed is his living environment, which includes 24/7 one-on-one supervision by people whose full-time job is to keep Jacky happy, clean, and safe. It’s literally their job. They stay up all night to do it, then they get to leave and live the rest of their lives, with fresh staff coming in to take over.

There was no way to I could provide this for Jack. Even if I had no job, no other kids, and no household to run, I didn’t have a half dozen other versions of me ready to step in and take over while I slept, or used the bathroom myself, or did all the things required for living one’s life.

Jack is happy and healthy and peaceful in his perfect group home. This is our miracle. It’s providing for him exactly what he needs, and it takes a lot of people to make it possible.

After learning about the pee patrol part of the staff’s job, I had this crystalline moment of clarity. I saw that it didn’t matter how hard I tried to give Jack what he needed. I couldn’t give it to him. It wasn’t physically possible for me to do it. God knew this. More importantly, he helped me know it, so we could stop struggling in vain and get Jack the right sort of care.

A few days ago, I stood in the Celestial Room at the temple, where I had another epiphany. In that glorious, light-filled room, beneath a glorious chandelier, I saw the contrast of my life during the thirteen years of parenting Jack at home when poop ruled our lives, and I saw myself at this moment: standing in a clean white dress, with inner and outer quiet, helping people who had come to the temple to worship.

It was a shift from turmoil to peace, and the transformation again woke me to the hands of my Heavenly Parents in my life.

Ten years ago, five years ago, two years ago–I could not have envisioned the beautiful transformation my Heavenly Parents have wrought on my family. During those dark times, I huddled at my campfire of faith. I saw Jesus Christ as my salvation, and I clung to the hope of the gospel. It was turning to this light and warmth that sustained me during those difficult years.

Today I am still feeding my campfire of faith, but it’s no longer in front of me. It isn’t an outside entity with me at the periphery.

It is inside of me.

I’m not speaking in metaphors.

I feel it actually burning within myself, driving out darkness.

It’s fueled by my love of God and the strength of the Savior’s Atonement. The glowing hot embers of my campfire of faith burn off negative influences and dark thoughts. They light the way for me to see things with my spiritual eyes, and they let me live in warmth and peace, not fear.

Elder Gong said, “The light will come when we desire and seek it, when we are patient and obedient to God’s commandments, when we are open to God’s grace, healing, and covenants.”

The dawn did break for us.

I bought Jack a rug for his bedroom, and a vacuum so he can happily clean it over and over again.

And I still have my campfire.