On Carrying and Being Carried

Sometimes I feel that my life is a very odd, very difficult balance between holding on and letting go—between being organized and structured on the one hand, and being free enough to accept whatever comes my way on the other.

How do I hold on?

By following routines for the benefit of the people on the autism spectrum.

By regimenting my time when the kids are at school or therapy, so as to accomplish all the things that need doing.

By micromanaging the meds, in all their abundance.

By organizing the therapy, the respite care, the rides to the orthodontist and merit badge classes, the grocery shopping et al.

Everyone is busy. I do not claim superiority in this realm. And honestly, it’s not a badge of nobility, just being busy. It’s simply a factual state at this point in time for me.

I’m busy because I have lots of special needs children, a husband, and church and work and my own interests. I manage by releasing my inner organizational hound and letting her do her thing, with the expectation that I can eat gingersnaps or whatever when things are completed. Or while I am completing them. Whatever. Cookies.

How do I let go?

By setting my expectations very low. For example, Fall Break is this week and I have made no plans other than to Be Open and Go With the Flow. Also, Let’s Survive.

By not fretting about anything ahead. Cross that bridge when we get there, etc. (Of course, now the break is basically here, and I am feeling less zen about it. It’s here. Like a root canal).

By partaking less of the social media. I still like it and I still use it, but less. I’ve realized that I lose my concentrated focus on my life and my responsibilities when I spend too much energy absorbing other people’s lives. I like people and I care about them. I just can’t read about them all the time. For survival purposes.

By taking naps when I can. These “found naps” make up for the lost time sleeping on weekends when Jack goes down late and snaps up like a hungry bear at the crack of dawn.

These examples make me sound like I have the holding on/letting go thing really buttoned up. My reality, though, isn’t so black and white. There is a lot of inward questioning if I’m letting go when I should be holding on, and vice versa.

I occasionally feel that special needs parenting is gaslighting me. When I can’t find solutions, I question my capacity, my mental acuity, my sanity. Am I just stupid? Am I missing the obvious answers? Am I the problem? Am I really not strong enough to face a five-day school holiday with Jack?

I spent a prayerful morning with God. I started with, “help me find solutions for this break,” which (when all the respite options were unavailable) turned into, “help me feel that Jack and I are not abandoned.”

My other children are going to spend time with cousins and grandparents. Jeff will be working. Jack and I will be hanging out, alone. I know on a rational level that the world isn’t abandoning us, simply because they can go and do regular things while we can’t.

So anyway, I prayed that I wouldn’t feel left behind, but that Jack and I could enjoy being together.

And three things happened:

  1. Junior is now able to help with Jack for a good chunk of time over the next few days. This one little switch in plans is basically saving my life.
  2. Jeff was able to take Friday off work, a minor miracle in this crazy work season.
  3. I read a poem written by my gifted friend, Melody, whose poetry sounds how my spiritual experiences feel.

“Never Yours to Carry”

There was something about weight,

about a heaviness of heart —

that brought me to my knees,

low down in the soil of Life,

deep with gravity of tears.


There was something in

the dark night of the soul

that left me blind to a light,

a light so close I dared not look,

and deaf to a voice in my ear —


what if I am not alone?

What if words of prophets

and songs of grandmothers

are real and He loves me,

and walks with me, carries me?


And what if I look for his face,

feel the weight of my head

on his shoulder and listen to

him whisper: You are mine.

I am your way. And this burden


was never yours to carry.


Melody Newey Johnson, 2016


I read it, and I woke up to the events of today. Before, there was sadness and a sense of isolation. Now, I see that Jack and I were never alone.

Jesus carved us in the palms of his hands. He will never forget us.

I am carrying Jack and Jesus is carrying me.


Charlie is Listening

I am doing a spotty job of reading The Book of Mormon aloud with the boys in the mornings as they eat breakfast. They are awake and eating at separate times, so I’ve started plunking away at 3 Nephi with Henry and 1 Nephi with Charlie.

What Charlie understands and what just whooshes through his head and flaps away behind him into the ether is a mystery. But I figured I could try; maybe he would understand something. So I told him about Nephi and his father, Lehi, the prophet, and that they lived in ancient times in Jerusalem.

“A long time ago?” Charlie perked up. “Like 1989?”

Vintage Charlie. He listens, but he listens around what you’re saying. He asks questions barely related to the topic. He leaves the subject at hand to fly away on tangents and asks vague questions multiple times.

He’s Charlie. He’s listening, but he processes all of it in his own way.

When Jeff gave Charlie his baby blessing, the entire thing was about how he would live his life by listening. He was blessed with the gift of listening to his parents and his brothers, listening to the people of his mission, and listening to his future family. It was a lovely blessing, unlike any I’d ever heard.

Then Jeff held Baby Charlie up under his armpits and dangled him in front of the congregation. Most people hold their infants in a cradled fashion when they present them to the audience following a baby blessing, as you might hold something delicate and porcelain.

Jeff held him like one might hold up a prize puppy at a fair. Charlie was wide-eyed and alert, all round cheeks and rubber-band wrists in his cable-knit suit. He didn’t mind be dangled. He was looking right back at those few hundred people looking at him, his light brown hair springing up in a fluff from his swivved comb-over.

After Truman’s crazytown preemie delivery, Charlie became a wild thing, obsessed with routines and rigid about pajamas, clothes, food, and basically life. He would wash his hands for an hour if I let him. He would insist on the same guitar pajamas every night NO MATTER WHAT. He would take off running down the street and I would follow, having no clue if he planned on coming back. He ate basically nothing but peanut butter sandwiches for a couple of years. He had the grossest diapers ever and they went on day after day, year after year.

I remember eating a cupcake at Kneaders with my friends late one night when we sneaked away for carbs and wailing to them, “Is Charlie ever going to listen to me? Will he ever potty train? Will he ever snap out of his little isolated state of Chully and pay attention?”

Brittany replied, “Maybe he is listening.”

As if to say, perhaps inside all that neuroticism there was a boy silently mulling everything he heard. I will admit that statement shut me down and made me think.

Charlie does listen. He is listening. Things have changed in Charlie’s world. Instead of sprinting down the street at the first thought that he would like a treat from the gas station, he asks me if we can go get something together.

He hears changes in tone and is beginning to understand emotions in other people beyond happy, sad, and mad. He informed me recently when he overheard someone say “the “eff” word,” which is to say that Charlie is paying attention.

He listens to my conversations with Jeff, which we can no longer have in code in front of the boys because we have a teen in the house, and because Charlie’s spelling has improved.

He listens when I ask him to get his shoes off the kitchen counter and put them away.

And he listens when I tell him about Lehi’s vision to leave Jerusalem.

He just thinks it happened 27 years ago.

Left Ear, Books Here

Jack’s ear is healing.

All it took was fourteen days of goop, drainage, pus, head-butting, shredding, kicking, throwing, window-breaking, wailing, screaming, drywall-smashing sadness. No big deal.

And the pediatrician who called and got us into the ENT at the children’s hospital the same day (Day 12), where six of us held Jack down while Dr. P. and his tiny vacuum on a stick suctioned out all of the goo. It was super fun. Pretty sure we scared all the young moms of tiny little typically-developing babies in the waiting room, which was like six feet from our exam room. Scaring screaming aside, it worked, and we are heading now toward real recovery.

Jack hasn’t tried to hurt anyone today and he hasn’t destroyed any property either (yet. Knock on wood). He is happily playing with his charging cable and enjoying this pleasant evening on the porch.

I’m starting to feel better, too. Jack’s window is repaired. Jeff has lined his bedroom walls with plywood to prevent more drywall destruction. His disposition is restored. I do not feel the desolation that stays with me when Jack is sick and miserable and there’s nothing I can do about it.

And I got all my midterm grades in, so brava, me.

There was the meltdown I had this morning when I couldn’t face my life for another day. Turns out I just needed a nap. I slept for two hours this afternoon. I went from desolate to bleary and calm in 120 unconscious minutes. I need to remember the value of a (long, uninterrupted climb-in-bed and turn on the electric blanket) nap when desolation is driving the bus.

In related news, I’m reading some stellar books, which gives me both periodic escape and an appreciation for humanity when I’m not currently feeling it myself.

The Boston Girl by Anita Diamant feels like somebody’s actual family history, told by a smart, relate-able woman of an immigrant family. I’m flying through this story of Addie Baum’s life as a Jewish girl coming of age in the early twentieth century. Anita Diamant tells stories the way they should be told. I love this book.

Tomorrow Will be Different by Maria Semple is possibly my favorite book I have yet consumed this year. She who wrote Where’d You Go, Bernadette, has written an even better, funnier, more charming, and delightfully crafted novel, in my opinion, of a sort of neurotic red-headed woman (like me!). It’s about Eleanor Flood of Seattle who resolves one day to wake up and live her life with greater purpose, which leads to wild things and loveliness and redemption. I don’t know if this book is actually terrific, or if I just think it is because it appeals to my weird sensibilities and chronic self-doubt. My favorite character was Timby. Please read and we can discuss.

I recently finished An Ember in the Ashes, an addictive YA fantasy which I devoured in roughly a day and a half. I gasped audibly when I spotted the sequel, A Torch Against the Night, on the Costco book table. This is what nerds do. The second wasn’t as good as the first, but I needed completion to the story. Sabaa Tahir wrote about a world which is kind of an intersection between The Hunger Games and Game of Thrones—essentially, brutal, harsh, and requiring people of great courage to survive it. The villains are extremely bad and the heroes are highly moral, which isn’t anything new, but which makes for a good read.

My darling Chris loaned me a book about a suicidal woman’s account of visiting her premortal state and talking face to face with God. A Glimpse of Heaven is a bad title for a tale of a real life vision that spoke to me when I needed it. Joanne Oblander isn’t a natural writer, but she excels in spirituality, endurance, and resilience. I learned a great deal from this book and saw it as a hand reaching down to snatch me up during a period of deep desolation (there’s that word again, *sigh*).

I used to think of books as my form of simply checking out, but they teach me and replenish me, too. Enriching entertainment. Win win.



Jack’s ear has been infected for nearly two weeks. Actually, it’s been infected for much of the last twelve and a half years, but whatever.

This time, it won’t go away. He is likely resistant to the antibiotics, probably because he’s had to take them 25,000 times. So we are onto ear drops and possibly having it cleaned out under sedation. *big big big big sigh*

I feel great empathy for my Jacky with the sick ear, who can’t tell us in appropriate ways that he hurts. And so he throws things, and bashes his head into things, and does Angry Tongue Face.

I also feel sad for myself.

Is that awfully self-centered? I realized yesterday that after ten plus days with sicky boy and his violent behaviors, that Jack’s every bout with illness sends me into a depression.

I am straight up sick and tired. And depressed.

When Jack gets sick, Jeff and I usually both get sick, too—not necessarily with whatever Jack has, but just with something. I’m pretty sure this is because we are sleep-deprived and stressed, thus weakening our immunity.

Also, during or after one of Jack’s ongoing illnesses, I feel like I am losing my grip on whatever normalcy we previously had. I’m worn out, physically and emotionally. Everything starts to slip. My inner voice tells me I’m weak and handling things poorly. I have no confidence in my abilities. I begin to yearn for a different life. I begin to wonder why no one has invented an ear transplant procedure yet.

*Dear Medical Community, Why haven’t you invented the EAR TRANSPLANT yet, I beseech you? Because we need it.*

I would give my left ear to Jack if it meant no more pus drainage, no more pain, no more sloshing fluid, no more ongoing discomfort.

Anyway, It’s completely lovely outside, right now, all yellows and reds and oranges, and waving grasses and sunshine and breezes. I love the fall. If heaven has a climate, I like to think it will be “autumn.” I digress. But I feel a measure of calm when I look at the fall colors and feel the cool mornings and the warm afternoons and see that the season in changing, as it always does.

To everything there is a season and a purpose.

I believe my spirit is telling me that I need to take care of myself, so I can keep taking care of Jack. There is no ear transplant procedure. Jack needs me to be smart and aware and filled with energy so I can help him. Elder Hales said in his most recent Conference address, speaking to caregivers, “Let the Savior be your caregiver.” I need Jesus to minister to me, not just for my own super selfish self, but so I can take care of Jack.

My neck has been taut and painful on the right side through all of this. My lower back has started hurting again. I’m eating junk food as though my life depended on it. I am trying to keep it together, basically. But, (PSA) I’m not in any mood to hear how I need more exercise and less sugar and how I need to eliminate the stressors from my life. (Angry side note: crappy, useless advice, that. Just send away Jack and the four-year-old, who are currently making parenting an outrageous adventure? Gah. Stop.)

I sound bitter. I don’t feel bitter. I feel tired. I feel that when Jack is sick and my life becomes an exercise in holding on for one more day, I’m much more susceptible to negativity than I regularly am. I don’t feel like God’s confidence in me is lacking, but I feel that my confidence in myself is.

I prayed fervently yesterday for the strength and the peace to keep going. It helped. I was able to blow my nose and stop weeping. I showered and dressed and took care of business. Jeff and our home teacher, Ray, gave Jack a priesthood blessing while I was teaching my class. Junior helped Jeff administer the ear drops, which is a pretty big deal as Jack doesn’t like lying on his side for fifteen minutes at a time while we swill liquid antiobiotics into his goopy left ear.

I just read a book about a woman who has a metric ton of challenges in her life. I like reading about how other people handle hardship. It’s become a form of fascinating, perpetual research for me. Her spirituality is remarkable. She has had visions and sometimes heard voices directing her how to face the ongoing pain and other insurmountable issues that have plagued her life. One thing that resonated was that she had to heal her spirit before her body and emotions could heal. My experience has shown me that this is a true concept.

And so, when Jack struggles to fight off an ear infection (or whatever the sickness may be), I must figure out how to heal my overwrought spirit.

I’m making a list, so I will remember these ideas:

  1. Pray. For relief, but also for strength. And inspiration.
  2. Give myself permission to feel weak and sad and heartsick. Let the emotions pass through me and move on.
  3. Sleep plenty.
  4. Maybe eat less chocolate? Slightly less? Or maybe not. I can’t commit at this point in time.
  5. Be outside. Just be there. Notice it. Feel it. Be aware and mindful in the outdoors.
  6. Let my subconscious mind release whatever it needs to release. Notice the hurt, and then notice if there is healing.
  7. Treat Jack’s illnesses with all the methods, and then
  8. Treat myself in my depressive states with gentleness.

And enjoy the vestiges of warm October days.

Trust the Process

Recently the school nurse called me twice in one day to tell me that Jack was hitting his head against things intentionally. I gave permission to for him to have ibuprofen the first time, and Tylenol the second. That took care of any headache caused by the hitting, but what about the cause of behavior in the first place? Was it frustration? Did he not feel well? Aside from scheduling an appointment with the pediatrician for after school (done) and using PECS and signs and telling Jack “show me,” what do you do when you don’t know what your nonverbal son needs?

This feels like a repeating scenario which defines special needs parenting, or “parenting in the dark” as we could euphemistically call it.

I do not mean to diminish the challenges of parenting typically-developing children. Parenting is hard, period.

But parenting a kid who can’t speak, who has complex medical issues, who has violent or destructive behaviors, who has mental delays—it’s a new level of tactical battle.

I’m beginning to view raising Jack as analogous to writing, perhaps because writing is something I do and teach, confidently. And consume, in the form of all the books written by all the people. Writing is one area where I feel I have things in hand. I know what I’m doing. Whereas with parenting people with special needs, you can learn a great deal and try all of it, which is very nice, but which guarantees nothing in the way of success.

So. Here is the comparison brewing in my mind: it’s a process. Parenting AND writing.

My friend and mentor, Ann Cannon, talks about trusting the writing process, of knowing that ideas will come, of using old & reliable as well as new & creative methods for writing when you feel stuck, of giving yourself space to ruminate and ponder, of and seeing the doing of it as something enjoyable.

It’s good advice for writing, and I’m beginning to see it as good advice for raising children who aren’t your average everyday small people.

I honestly don’t have the answers for Jack. I don’t know what is wrong when he bashes his head against the floor, or breaks the window in his bedroom, or does Angry Tongue Face and charges at people. He’s frustrated. He’s mad. He can’t speak and he is developmentally delayed and it isn’t fair. And the head banging this week? It was because he has another ear infection and it hurts.

Here is how I interpret the process of special needs parenting: I must foremost calm my own panic.

If I do this, I can think dispassionately about the time Jack stopped walking for a week, or got a horrific skin disease that lasted six months, or had 75,000 ear surgeries, or got the stomach flu twice a year and covered the house in eau de vomit, or how he drew with Sharpie on the cabinets, or how he threw lamps off the deck.

And if I remain calm, I can realize that we have always made it through. The answers have always eventually materialized.

I dreamed last night that I was walking along a path beside a lake. I was alone.

An enormous grizzly bear emerged from the woods to my left and came swiftly up the hill toward me. There was no time for escape. A voice in my head warned, “Curl up and play dead.” So I did. The bear straddled me, stopped, and pushed his nose into me. I felt hot breath on my neck and smelled decaying leaves and cold water and wet fur. My heart skittered.

“Help me,” I prayed, silently screaming. I did not breathe. I did not move.

The bear pushed a giant paw at me. His claws scraped my arm. I remained limp. The hot animal breath receded and the bear walked away.

When I woke, I knew exactly what the dream meant.

I was afraid of the bear, like I am afraid of Jack’s future.

What new terrors will come? Will he wreck our house to the point that it implodes? Will he throw something at my head while I’m driving and knock me unconscious? Will he have to live in a facility one day where he isn’t loved or appreciated, and where the risk of abuse is high, particularly as he is nonverbal?

These fears are my grizzly bear.

But my dream spoke to my fears and disintegrated them. The same voice in my head that warned me to play dead when the bear approached also told me this: when your fears approach swiftly, with rippling fur and deadly claws and teeth, you only have to listen to be safe. 

Trust the process of living without all the answers.

Trust when the spirit whispers.

Trust God, who knows.



Through a Broken Glass, Darkly

Jack broke the window in his bedroom this weekend.

Which begs the question (in my mind, anyway), does this form of confessional prose get old to whoever is reading my stuff? It’s rather formulaic, I KNOW.

Something crazy happens and I write about it. I deconstruct it and generally come to some sense of…I don’t know. Completion, about the whole thing? Acceptance. Understanding. Learning. Or something.

Perhaps the manner in which my life unfolds on this blog is predictable in this sense, or at the very least, repetitive.

I fully understand the nature of this cycle, because my darlings, I live it. On repeat. ForEVAH.

But when Jack broke the window (incidentally, using an object, not a body part; he was not injured), I wondered, “If I write about this event, does it become like every other destructive/difficult event in all the other posts? Am I just cranking out more of the ‘crazy household=my regular life, yo‘ type of writing that has been my thing these many years?”

*Please note, I am not fishing for validation with this rhetorical question. I’m pondering it myself and trying to work my way through it. The end.*

Jeff taped cardboard over the broken pane until we can get it replaced. While I was bathing filthy Truman, post-cabin, we heard something fall down the laundry chute and shatter. Jack had worked the coverings off the broken window, removed some shards, and tossed them down, SMASH!

I put Henry in charge of guarding Jack, who had already stepped on glass and was tracking blood all over my bedroom furniture and the hallway, while Jeff worked on securing the window, and I cleaned the glass from the bottom on the laundry chute.

First I swept up all the broken glass. Then I wiped up streaks of blood from various spots upstairs. I prevented Jack from entering his room while Jeff dealt with the window. I washed Truman’s hair, listened to him scream about being cold and the pajamas being wrong and the fact that HE WAS NOT TIRED. Henry read the boys a Halloween book while I cleaned up more blood smears from my down comforter and the chair-and-a-half. We said prayers and three of the four people went to their beds.

Do I care if they are not sleeping at this moment?

No. No, I do not.

This weekend was one of predictable hardship: we went to the cabin; it was horribly difficult coping with Jack there. Jeff and I didn’t get to watch or listen to as much of LDS General Conference as we would’ve liked because of the wrangling of the children. And the destruction.

I feel like there should be some glorious epiphany, following the breaking of a window AND ye old General Conference weekend. Like, I should have woven together some terrific thoughts about the Jack trauma and the wisdom I gleaned during the conference talks (because when I could listen, I did glean. Oh yes, the people. I gleaned).

But it’s early yet, and I am still shell-shocked from the unending pacing, hitting, head-bashing, head-butting, glass-shattering, poo-cleaning, Jack redirecting glory of the past two days.

And I have woven nothing at this point. Good day, sir.

Things That Happened This Weekend

  1. Truman screamed when we wouldn’t stop at McDonald’s. This was as we left a lunch gathering with cousins where he did not eat. Henry, in the spirit of appeasing his little bro through the art of subtle manipulation, looked at the McDonald’s we were driving by and said, “That’s not McDonald’s. It’s Shick Shonald’s.” “Oh,” said Truman, cowed and silenced.
  2. We had family pictures with Jeff’s extended family. To get a feel for the mood of this event, envision three tiny babies, six toddlers and preschoolers, and one blunt-instrument Jack, who didn’t feel like posing nor behaving. He stripped his gym shorts off and put on Charlie’s spare gym shorts with Charlie’s Teenage Mutant Ninja Turtles t-shirt, which was skin-tight, outta sight. He also smashed a plate of brownies and let loose a fair amount of screaming and wailing. Family pictures are the antithesis of peaceful togetherness, which feels like a great irony. Because family, etc.
  3. I was again the de facto Relief Society pianist, because I am all that stands between us and a cappella versions of the opening and closing hymns. And so, they pick me, and my imperfect playing. It’s humbling, because I’m really really really not good at it. I struggle to keep the introductory notes clean. I make lots of mistakes. Isn’t there a bit of (untested, amateur) advice circulating the internet that says you should do something that scares you every day? Well try playing accompaniment for Relief Society when your piano skills are “Fine for Oft-Practiced Songs at Home with Limited Audiences,” but “Not Quite Church Pianist Quality.” It’s a good trick.
  4. I made homemade, thick, soft, buttery sugar cookies. I don’t do shapes. Just circles. Whatever. Also, amen.
  5. I finished one of the best books I have read in a long time based on a the recommendation of my homie, Amy from Writing Group. It’s the memoir When We Were the Kennedy’s by Monica Wood. How can one be transfixed by the true story of a girl growing up in a New England mill town in the early 1960’s, learning about grief and finding her footing after her father dies unexpectedly on his way to work, you might ask? Well read it, and see. I was spellbound. It was so real, so astute, so honestly human. I absolutely loved Wood’s language, her generosity in remembering the people of her hometown, and her ability to spin a grown-up perspective into the wobbly world of her family’s life without her bread-winning, happy, stabilizing father.
  6. I sang “Landslide” quite a few times out loud and in my head.
  7. I listened to a lesson about forgiveness and thought about all the people whom I ought to forgive. One thing I gleaned from the lesson is that many of us see ourselves as quite forgiving people. But when really hard things happen, even the most forgiving among us can find that forgiving offenders feels basically impossible. A few people came to mind when I did a google search of my soul for those I inwardly view with discord. I am now in a state of letting go and also mellowing out, even while I ask for forgiveness for myself, for not extending forgiveness before. Forgiveness: it’s what’s for dinner.
  8. I argued with Truman about shoes, chicken, cereal, puffy vests, church, and shouting in my ear. I argued with Charlie about pants. I let Jack drag me around the cabin during the photo shoot because he hated it and was uncomfortable in his own skin, and just needed to go already.
  9. I thought about posting a #threefictionalcharacters photo on fb and insta. I’ll post it here. Because honestly nobody cares about anybody else’s #threefictionalcharacters. It’s self-indulgent and kind of ridiculous, but whatever. Here is my half-hearted contribution. (Kimmy Schmidt, Gilly, & Jane Eyre. Discuss)img_1686


Charlie informed us last week that he no longer gets out of the left door of the van. Ever. Sorry, nope. He will only exit to the right, thank you very much.

We learned that he is repulsed by the red booster seat and refuses to touch it, or “chutch” it (Truman’s word for “touch”). Truman, fortunately, doesn’t have a problem with either the left van door or the red booster seat.

But Truman does have a problem with lots of other things. Like the bubbles in the bath. He wants them there, but he doesn’t want them sticking to his legs.

When he eats breakfast, he wants a blanket wrapped around him—tightly wrapped, yet not hindering his arms whatsoever, so making this happen is lots of fun. He rejects most food when it is not a dinosaur nugget or dry cereal in a sandwich baggie, because he likes his meals beige and portable.

With three of my people now officially on the autism spectrum, the breadth of rigidity issues our family sees playing out daily is stunning. Jack can’t walk past any dishes soaking in the sink without pouring the water from all of them. He literally can’t even. Charlie requires multiple hugs and kisses before bedtime, and must inform me when it’s “last hug and kiss.” Of course, I like this one.

Charlie doesn’t walk through the house anymore. He parkours. You know when Charlie is coming because he thuds, leaping from the stairs to the rug, to the other rug, to the kitchen. He sometimes crashes right into people who are standing on the rug where he is aiming to land, because he’s looking at his feet; also, because landing on the rug is more important than not jumping on your mom or your brother. Picture yourself jumping from rock to rock to cross a river. Same concept in Charlie’s world. Get out of the way or this eight-year-old Jason Bourne will take you out. Good news is that his parkour thuds wake me up in the middle of the night if he tries to sneak in and get the iPad from my room.

Truman eats sausage patties, but won’t eat sausage broken into bits as it’s cooking. No way, José. Jack wants to go for a ride when he gets home from school, no questions asked. Because it’s the routine, duh. Can’t take him on that ride after school for one reason or another? “Okay, fine. Have it your way,” says nonverbal Jack, as he throws dishes, urinates on the bathroom floor, and crams toothbrushes into heat vent. Show, don’t tell, writers say. Jack shows.

You have to ask yourself in these situations, at what point do we require flexibility? When do we compel a kid to try doing something a different way in order to learn to cope with change? When do we give in to a kid’s request, simply because it’s the routine and that’s the way he wants it, even if it isn’t working for the rest of us? A good follow-up question is, how much screaming are we willing to subject ourselves to? As Jeff likes to ask, “Do we want to die on this hill?”

The answer seems to differ from day to day and one situation to the next. I have no definitive answers. But I have noticed a growing resilience in myself when the menacing twin horsemen of the autism apocalypse, Rigidity and Anxiety, rear their neurotic heads.

Ever since my non-ironic (i.e. life-changing) spiritual journey began last spring, I don’t feel guilt about this autism business. The idiosyncrasies don’t freak me out so much anymore. They make me shrug, yes. But the hypersensitivity to transitions and routines, the sensory mania—they aren’t my fault. Nor are they the boys’ fault. There is no blame in this equation, which I think I tried to squeeze somewhere in there before.

Nor do I respond to my kids’ neuroses with my own primeval panic that this is the never-ending path of heinousness our lives will eternally follow.

I have begun to feel neutral. I can roll my eyes at the behaviors and let it go, rather than escalating it with my own fear and despair.

I am the calm in the face of the guys’ storms. Jeff has been good at this for years. I am only now learning it.

But what caused this seismic shift, you might ask? How do you stay cool and peaceful when it’s a hot mess all around you? What about when you’re stuck in the fear/panic/despair trough of a wave, which is surrounded by more choppy waves? What about all those years before, when I was praying and trying and hoping but still suffered?

Perhaps I needed to have years of desperation to understand relief when I finally found it.

People have asked me how I undertook my spiritual journey. You guys, it was basic: therapy, prayer, exercise, gospel study, meditation, going to the temple, and paying attention to my dreams. I think the difference this time, from all the many other thousands of times I tried all the same things, was that I decided to accept anything God gave me.


I decided to accept anything God gave me.

I believe the years of compounding hardship brought me to this point.

Where I was rigid before, now I was pliable.

“Tell me what to do, God, and help me do it. I am ready.”

We both were.



A little bird told me

I’ve been having these little thoughts that Jeff and I should read scriptures with Henry in the morning before school. Mornings are insane, and he’s hard to drag out of bed, so I wasn’t sure this idea would really work. Also, Jack usually poops in his room and generates tons of pee laundry, and tries to flush toys and toothbrushes down the toilet. So in addition to making breakfast (teen boys needs eggs and such), Jack is a full time job. But I kept getting those nudges.

I felt that the spirit was telling me to wake Jack up like ten or so minutes before he normally wakes up, thus heading off the poop, while simultaneously giving Jeff and me time to read a few versus with H. Yes, there is still breakfast cooking and Jack’s meds to prepare, but this slight revision of the morning schedule just may be the answer.

It worked today, beautifully.

One of the reasons we don’t read scriptures as a family is because 2-3 children are screaming and not understanding and not focusing and running around, and generally behaving like they have autism. This is because they do, in fact, have autism.

If we read a single verse, Charlie asks 17,000 unrelated questions and Truman is talking about pipe and sewer systems and Jack is shredding papers and cramming them into the heat vents, while deboning my laptop charging cable. Reading scriptures with my boys feels like opening a window to release a trapped bird into the outdoors, but instead of flying away, the bird panics and flies directly into your face with frantic wing-flapping and squawking, while its nasty little bird legs claw at your eyeballs. So ultra instructive is our family scripture study.


But we can begin with Henry. I’m all over heading Jack’s morning antics off with gospel study that he didn’t even see coming. We can add in the other boys once we get this working.

Alternate Life

I washed my car yesterday, so it’s raining, currently. This is one of those big, windy squalls that creeps, nay forbodes across the looming Wasatch Range of a late afternoon in the summer and fall. Timp was shadowy, shrouded in mist as I drove the boys to therapy after school.

Charlie wailed 75% of the way there, because he hates Tuesdays and he didn’t want to go to camp and he was very very very very sad. We sat in traffic. Truman was perfectly thrilled about the prospect of the sensory room. He sat contentedly. They seem to take turns shrieking and melting down about things.

I was calm. This is what we do. We drive places in traffic and with the sky portending storms, whilst boys are venting their angst at me. Nothing to be alarmed about. It’s simply what we do.

Do you ever envision an alternate life for yourself? I sometimes picture myself as a working mom of one or two typically-developing children. Our house isn’t trashed. Autism is somebody’s else’s problem. We take lots of trips. Home life is quiet. We are normal.

But as my friend, Blue, once said about a pretend, alternate life “It is a ghost ship, with a ghost captain.”

It’s not real. I should not be haunted by it.

It exists only in my imagination.

My actual life is something weighty. I’m managing it, but only just. People tell me to write a book, and I’m like, “Getting published locally maybe twice a year is already sapping me.” And also, “I am less concerned with writing a book than I am with getting everyone fed, clothed, bathed, and in bed at a reasonable hour.” I might add, “I literally can’t even.”

While I’m quoting myself, let me conclude with, “People write for different reasons. Recognition IS NOT one of mine. Who reads my stuff is none of my business. What they think of it is of little consequence to me. This is not me being humble. I straight up don’t do it so people will know my name.”

And if that isn’t enough, I’ll toss in, “There are times and seasons. I’m raising these super time-intensive children and teaching and managing a household and keeping a precarious lid on my own mental health. And I have a marriage to nurture. Feel free to write a book yourself, though. Cheers.”

See, this is what happens when I need chocolate.