I have a post about my will vs. God’s will featured over at Segullah.org, where I am now a regular contributor. The women behind this publication are a bunch of cool cats who, frankly, inspire me. I’m super jazzed to join them.
I’m sitting in an armchair in front of a big picture window with a pastoral parkland view in the foreground and mountains in the background. I’m at a library which is near the autism center where my boys have therapy.
They’ve had a two-month behavior therapy hiatus because of some issues, but we are back at it tonight. And I have PTSD because there was an hour and a half precursor of Charlie screaming and writhing on the floor before Jeff and I coaxed, enticed, threatened, and finally coerced him into the car. Charlie thinks therapy is babyish. Because his friends don’t go to therapy, he thinks he shouldn’t have to go either. I’ve told him all the reasons why he needs it, but sometimes autism looks like a brick wall. A brick wall that can shout at you. Because I’m the parent who gets to take and pick up from therapy sessions, I will enjoy listening to the lamentations both there and back #perksofbeingamom #yay
The rigidity of autism is a weeping blister on the back of my heel. It’s a cut at the base of my thumb, a wound that gets wet with frequent hand-washing, is overused and stretched, which makes it reopen and bleed. This inflexibility is a heavy steamer trunk I drag along relentlessly behind me. Because I can’t leave it behind without leaving my children behind.
My kids’ brains can get stuck on something—whether it is something they want or something they most assuredly don’t want. You can try to change their minds, but you will find that it’s painful and awful and doesn’t usually work.
I’ve learned from all the behavior therapy that has happened in our home over the years that as a parent, I must outlast the tantrum. Giving in ensures duplicate behaviors next time I ask the child to do whatever thing I am asking him to do. When I outlast the tantrum, remaining calm and neutral (ha!) in the midst of screaming, I win. The child learns that negative behaviors don’t work, but that I am here and ready to help him do that difficult thing, as soon as he is calm.
I outlasted the tantrum tonight, but at what cost? I’m ready to go to bed and it’s 4:42 pm. The atmosphere in our home and car was war zone-ish. I’m ready to throw stacks of pottery at a wall and cry myself to sleep. Jeff and I have to assume a totalitarian role at times like this, because unless Charlie is made to go to therapy, he will never agree to go. The bigger the child with autism, the bigger the belligerence.
It’s the same story with Truman and church. He will NEVER NEVER EVER willingly go to church. EVER. This is because he doesn’t want to wear church clothes, sit quietly, and deal with the sensory overload of the chapel during sacrament meeting. He prefers tooling around at home in tiny shorts and no shirt, and playing while eating crackers. Getting one’s family to church is always a circus (I assume; what do I know? My kids aren’t like other people’s kids), but Truman takes circus to the next level. Jeff and I have to “process” him, meaning one of us holds him (angry, screaming, kicking), while the other one puts his church clothes on. Once he’s processed and we arrive at the church, he cools off and does okay.
Have I ever mentioned that transitions suck for my kids?
So why am I writing about this?
I’m in an unhappy state as I decompress from the therapy drama. It will ramp back up in an hour when I pick the boys up after their session and hear how Charlie wants to be rewarded for his horrific behavior. I’m weary, being the front line for all of my boys’ neuroses. It’s a painful place to dwell. No one wants to live on a war front.
But this is where I live. And (perhaps depressingly) it’s vastly easier than it was in the past because I’m not handling Jack’s behaviors in tandem.
Just this morning as I stepped out of the shower, I thought about how my parenting life has really taught me to trust God. I’ve seen how he comes through for us, time and again. I am not the best at remembering this when Charlie is screaming and Truman is kicking the walls.
I think I need a mantra phrase to literally cry out when I’m in one of these craptown battles against the autism wills. Something like “Push Through,” or “I Will Win,” or “Children are an Heritage of the Lord,” haha.
I’m open to suggestions.
Sometimes I post about what I am reading. Today is one of those days.
A couple of disclaimers about these reviews:
A) They don’t necessarily summarize the book.
B) I’m no longer an English major being made to read things. I read what I want. Sometimes it’s YA. Sometimes it’s literary. Sometimes it’s chick lit. The end.
C) Because I love books, I’d love to hear your book recommendations and feedback, too. Chime in!
Eligible by Curtis Sittenfeld
This book is a retelling of Jane Austen’s Pride and Prejudice, set it modern day Cincinnati (and New York and the Bay Area). I resisted reading it when it was published a few years hence, because I didn’t want the modernity of it to ruin what is basically a perfect original book. I stand corrected. It ruined nothing. I loved it. It was masterfully reworked into today’s world—the characters, the plot, and even the dialogue. I’m a little in awe of Curtis Sittenfeld for doing a retake on one of the world’s best books and doing such a bang-up job of it. True Jane-ites who relish the Regency time and setting may not go for the modern updates, but they totally worked for me.
Frenchman’s Creek by Daphne du Maurier
While visiting my sister over the summer in San Francisco, we saw the newest film adaptation of My Cousin Rachel late one night in the Embarcadero. It inspired me to delve back into the moody drama of du Maurier’s books. Frenchman’s Creek is less psychologically dark and more culturally and romantically driven. It tells a familiar tale from literature of a disaffected upper-class woman looking for fulfillment. It’s du Maurier, so it’s still dark, but also skillfully rendered and fresh, considering it was published something like seventy years ago. I liked it okay and I still think Daphne du Maurier is cool.
From the Mixed-Up Files of Mrs. Basil E. Frankweiler by E.L. Konisburg
This is one of those books everyone should revisit because it gets better with age. It’s a Newberry winner and it’s definitely dated. Most of the events in the book would never happen now because technology is so different. Yet it’s a glorious time capsule for a not-too-distant era during which young people felt similar things to young people today, and of all time periods, frankly. It’s kind of a magical take on the “running away from home” and also “taking a journey” tropes of YA lit.
A Gathering of Days: A New England Girl’s Journal, 1830-1832 by Joan W. Blos
You know what I love about YA fiction? You can read an entire book in a day. And if you choose wisely, much of it is just so terrific. I’m stuck on Newberry winners currently, which is a good place to be. Joan Blos’s book was published in 1979 and sucked me right in. It’s beautifully rendered and historically deft. I felt slothful after reading about the work ethic and never-ending daily necessities of these New Hampshire townsfolk. The characters are based on real people who lived in the area, but are vividly imagined and rounded out in this story which has stayed with me for days after finishing it.
Chalice by Robin McKinley
This is Robin McKinley at her weirdest. And yet, I still love her. I feel like you might have to already be a devoted McKinley fan to jump into this fantasy book, though. It’s very her. It’s like she took her characters and plot lines and fantasy elements from The Hero and the Crown, The Blue Sword, and Beauty—all better-known books, put them on steroids and said, “Screw it. This is what I like and this is what I do. Read it or don’t read it.” Do you like how I project personalities onto writers? This book is crazy. It’s about honey and how honey saves a kingdom, basically. I liked it.
The Storyspinner by Becky Wallace
I met Becky at a writing and teaching conference a couple of years ago. She is a tiny little live wire with big creative ideas and a huge heart. Her YA series The Keeper’s Chronicles starts with The Storyspinner. Book two is The Skylighter. I was enamored with the characters and the story arc in the books, both of which I raced through. Her pacing, shifting narrators, action, and beautifully envisioned world reaffirmed to me why YA fiction is so glorious. I love meeting writers in person AND on the page. Books and book people are the best. I’m a Becky Wallace fan.
The Hundredth Queen by Emily R. King
Emily King lives in Utah, like me (yay, Utah writers!), and writes cool stories. This book’s setting and story were completely engaging to me. I’m also a fan of books with fully-realized female characters, which this one does in spades. It’s got the magical realism elements that so many YA stories do, and it injects them into the story of a girl being forced into a marriage as the hundredth wife of a rajah. It’s a coming-of-age, but also coming-of-awareness, ability, and competency tale as Kalinda takes her future into her own hands. This was a fun read.
The Secret Chord by Geraldine Brooks
I am currently reading this book. Brooks is a gifted writer. One of my favorite books ever is her Caleb’s Crossing. I also loved Year of Wonders. This one is an imagining of David from the Old Testament. While the Bible is totally my jam, I haven’t always loved every movie or book which tries to flesh out biblical stories. The Secret Chord is so classically Brooks, though, meaning it is written exquisitely. She understands people and cultures and the undercurrents which drive them. I am relishing this book.
You Are Boring, But You Are Uniquely Boring by Louise Plummer and Ann Cannon
This is a memoir-writing book for the average person (yay for being average!), pieced out in lovely snippets by my two writing mentors and friends, Ann and Louise. They are so good at teaching the art of writing by making it accessible and entertaining. Read it and be inspired to write about your own life. I predict you may also fall in love with the authors.
Six of Crows by Leigh Bardugo
This book and the sequel, Crooked Kingdom are a darkly imagined look at the “deplorables” I supposed you could say, of a fantasy city, Ketterdam. But are the thieves and slum-dwelling riff-raff the actual villains? These books showcase the rot that infiltrates humanity when it is driven by greed, abuse, and unchecked lust. They are exciting reads with an ensemble of relatable characters, despite their mystical gifts and probably because of their hang ups.
What are you reading? Please tell.
I listen to classical music when I drive.
This might make me seem like an elderly woman, to which I say, “Works for me. I like old ladies.” My station of choice is Symphony Hall (channel 76) on Sirius XM satellite radio. I like it because, in addition to beautiful music, they have smart commentary that teaches me a whole lot about the music and the composers. Also, there are no commercials, huzzah. And it does more for me than basically all other music (which I still like, a lot). It fixes my brain. I don’t know how, but it does.
Last week, one of the DJ’s spoke about an obscure (to me) composer who, he said, “went dark,” for a period of about three years during his prime composing age because “he was silenced by depression.”
This went straight to my heart. I understood that composer, whose name I can’t even remember.
Creativity is a delicate thing.
It operates at the mercy of factors that seem to change with the wind, the seasons, and all sorts of shifting circumstances. When my 24/7 life featured me running ragged for Jack’s care, I wrote prolifically and continuously. Now, I have more time and room to think, and I simply don’t care to write.
Just now I started to type, “it means nothing to me,” but I couldn’t. Clearly, writing still means something to me, but it means something different.
I suppose the things I have to say feel more private, less funny, less like “the old blog,” darker, and definitely more monotonous. I couldn’t care less about publication or numbers of hits as charted by Google Analytics. If blogging is a conversation with readers, I am not holding up my end of it.
Blogs are dead, or so I hear, though I have been defiantly blogging regularly the last 5.5 years in spite of the so-called death of the blog. Are they dead because nobody reads them anymore? I’m the wrong person to discuss this topic, because I obviously do what I want in the online pontificating sphere, regardless of internet trends. We can probably agree that it’s all about Instagram now, which I have no problem with. You can say everything you need in a lengthy (or brief) Instagram caption, and there’s a photo, and it’s all right there in ye olde news feed.
Or maybe blogs are dead because bloggers are tired of blogging.
Who’s to say?
Anyway, the fact remains that I have less to say now, and it isn’t lighthearted or even particularly enlightening.
We visited Jack today, which was
E) Bittersweet (because I had to leave him again)
F) Emotional (see above)
Since returning home, I have said out loud, multiple times, “If there were any other way, I would have done it,” to which Jeff unironically said, “There was no other way.”
I would have done anything to keep Jack at home with us. We did try everything. Nothing worked.
There was no other way.
Seeing Jack happy and healthy and content today boosted me. I’m happy with his new school and with how much improved his behavior is there. We had lunch at the park. We played at his house and explored the backyard.
But leaving Jack two hours away is not easy. I am thinking ahead to Thanksgiving and Christmas, and I feel conflicted and a little depressed.
Life is complex.
We are complex.
It’s not bad, it’s just the way it is.
The three and a half months since Jack’s placement in his group home have been a period of mourning, adjusting, and accepting. I keep comparing my grief to a body of water in which I am floating. That’s what it feels like. I’m adrift and disconnected from the worldly things which tend to weigh us down. I’m just floating.
Except at times when I feel I am coming undone by the things I CAN’T do.
Like, being with Jack on a regular basis and being part of his daily life and care.
My discomfort with this situation manifests in sadness (at life) and discouragement (at my floating state/inability to get things done anymore). To summarize, I know on a profound level that God knew Jack needed residential care, that he loves Jack, and that he led us to the right setting and caregivers for our son. But I also feel unsettled, because this is not the family life I envisioned when I embarked on motherhood with my whole self nearly sixteen years ago.
Feeling unsettled results in stewing. My muscle memory is to never let my guard down when I’m home with my kids, because I must always be on standby (because I used to always have to be on standby for Jack). I’m not used to being still. I’m used to waiting on edge, heading off disasters, deescalating ugly situations, and surviving home life with the most extreme behavior conditions at play.
Now, when I stew, I look around me at the beat-up state of our house. I recognize, gratefully and sheepishly, that I am not in the aftermath of a hurricane, nor coping with murky floodwaters swirling around everything I own. Truly, I have nothing to complain about.
But really, I am sometimes disillusioned with the constant state of entropy in the world. Humans sleep, pray, get up, work, learn, try, keep trying. And yet, the world moves in an endless state of decay. Can we ever keep up? Will our efforts ever be enough to keep productive life afloat in a temporal world?
I believe the answer is no. We can’t. Only God can. That’s the way he designed life on earth to be. We could live and we could choose, but we are incapable of saving ourselves because that wasn’t the point of creation.
The point was to give us the chance to choose Jesus Christ, without anyone forcing us to choose Him. It was to let us see that we are capable of glorious things, but without his grace, power, and help, it all means nothing because we are lost.
I felt immensely sad this morning. I felt the weight of my house, which looks like a film set for an orphanage (not really. Okay. maybe a little? Of course what I mean is that it looks like my house has seen lots of children hoofing it over every surface and sometimes literally hammering it to heck).
I felt weary from the grief that is my weighty companion.
I felt incompetent. I wanted to trust God and stop being sad that Jack is away. I wanted to put my temporal house in order. I also wanted to go back to sleep.
I said a prayer in my heart and started cleaning the kitchen. I attacked the laundry while I listened to Russell M. Nelson’s recent talk about drawing on the Savior’s power in your own life.
“Why aren’t they shouting this from the rooftops and across all the social media sites like every dang day?!” I wanted to tweet out as I mopped dirty floors. Because this—drawing on the power of Jesus Christ—is how you do life when it is impossible, miserable, overwhelming, depressing, unexpected, disappointing, and tiresome.
It just is. I have listened to the talk roughly 18 times because I am giving a lesson on it this Sunday, and yet it filled me up again, more thoroughly than before. I wept as I swept. I prayed for strength, for power that comes from a well greater than my own stores or abilities.
I cleaned my forlorn house. I took Truman to the park and then to kindergarten. I drove to Home Depot and bought paint and quarter round trim and other random renovation supplies. I picked up my boys from school and began attacking the baseboards in our kitchen/living room. Jeff joined in and we began fixing things that have been broken or sadly neglected for many years in the name of being Jack’s parents.
Perhaps this sounds like the sort of activity you undertake regularly. Perhaps you are unimpressed because your energy level, motivation, and skill at home improvements way surpasses mine. But the fact remains, I did more today than I have done since Jack left, and I was able to do it because I prayed and Jesus lent me strength I didn’t otherwise have.
I still feel sad Jack lives far away. But I am more grateful he’s happy and healthy and having his needs met perfectly by caring people.
There are mountains, valleys, plains, jungles, and oceans of things that need doing in my house and in my life. But today I was able to begin. He sent me energy and a will to pick myself up and get started.
You guys, I just don’t have anything to say.
I don’t know what to write about. I am pretty disconnected from Jack’s day to day life. There are other, comparatively minor autism-related issues with my other boys. But they feel SO VERY SMALL and, frankly, super easy compared to the challenges we faced caring for Jack.
There’s grief, which I’m tired of talking about.
I don’t want to list my every daily trouble.
I’m not the kind of writer/blogger who creates a beautiful lifestyle/persona/aura thing which people enjoy consuming because it’s so stylish and gorgeous.
I have a cold and I haven’t washed my hair in four days. I’m not sleeping well. The transition back to school has wearied me more than it should have, but whatever. It’s grief and I can’t hurry it along or ask it to leave.
It’s real and it just IS.
This was a basic sort of day, involving a morning nap because I felt awful, coaxing my kindergartener to eat lunch and go to his second day of school (“I think I’ll have a day off,” he announced mid-morning #eyeroll), driving to Costco because we were out of everything, and prepping my lessons for class tomorrow.
It was the sort of day where I could not even when my little boys started fighting. Laundry feels like way too much work. Reading the book I got at the library is the one thing that really sounds reasonable.
I did order and ship Jack a coat. And I handled miscellaneous other Jack-related correspondence.
I just don’t have anything inspirational to say. I don’t have the capacity to engage in social things. Yesterday I felt pretty good about Jack’s new life. Today, I know he’s in the right place, but I don’t like being so separate from him.
I feel like my mothering relating to Jack now is a sham.
I’m sitting at a little white Ikea table in the corner of a climbing gym, watching Charlie take part in a climbing class for kids. It’s his first ever organized sport. Ever.
I watched him amble in the line of kids across the gym to a new climbing area with his signature mosey (arms slowly swinging, a literal spring in his step–okay not literal, because he doesn’t have actual springs in his shoes, he just walks like he does), and all I could think was “look how far we have come since Charlie was a feral five-year-old consumed by anxiety and impossible to wrangle.”
He can do things in a group! He can follow instructions! And he has always been unnaturally good at climbing, so he’s in his element!
Since Jack resettled, life at our end has changed incredibly quickly and thoroughly. I continue to be amazed by the motion of our lives.
Charlie is now mainstreamed at school, with resource help. He is excited about school because he gets to ride or scoot there and see his neighborhood friends. He feels independent. He is becoming more independent. This is good for both of us. One of my Charlie fears has been that he will never quite achieve self-sufficiency, but be stuck in limbo at home, or living apart with constant managing from Jeff and me, when he desires complete independence. Seeing Charlie succeed, and yearn for more success heartens me. He tries so hard, and it’s working. His eternal nature is, like Jack’s, sunny. And determined. Curious. Unflagging. Willing.
I’m sure I will experience withdrawal once my children don’t need me all the time. But at this moment, I need to believe that I won’t always be standing beneath them, figuratively holding a net on the chance that they fall.
My baby begins kindergarten next week—a milestone I never actually thought would arrive. The years after Truman’s birth, and before Jack’s placement this spring sandblasted me. Any part of me resembling the old Megan sloughed off. I grew new skin, but not before finding myself raw and weeping as disabilities parenting peeled me away in layers.
My friend Liz recently said to me that when raising children, “zero to five lasts forever,” which summed up parenting small people, at least for jaded people like me, with an economy of words.
We then agreed that the years twelve to eighteen go by in a blink.
I look at my university students and see them not so much as grown ups but as somebody’s recent teen. They are darling and I love them already.
Motherhood did this to me.
I have been awake since 4 am, because it’s the first day of school: my own (returning as a university writing instructor) and two of my children’s (as students). This is how anxiety manifests in me—sleepless early mornings.
I’m sorry if you’re sorry to see summer end. But I’m personally okay with it because I love the fall and we (meaning, my family) all do better with routines. If you give our days structure, we flourish, me included.
For the first time ever, I am not putting Jack on the bus for his first day. He will begin 8th grade this week in a different town, in a different school district. I shipped him a new backpack, size 14 Birkenstocks (men’s, clodhoppers, whoa!), a few of his favorite stretchy shorts, and some Star Wars t-shirts. I am doing my part from a distance. I think I’ll text his caregivers and ask for a back-to-school pic.
I don’t feel sad about Jack starting school in his new town. I’m excited for the fresh start. This could be my own Pollyanna-ish love for new school years and new school clothes and the chance to start over again.
But even if I’m foolishly optimistic at the start of a new school year, the fact remains: stagnation is bad. I prefer progress and growth. I can see now that we had reached a point of stagnation in the last couple of years with Jack at home with us. He wasn’t progressing, despite all our efforts. He needed a new setting, new routines, new people, new environment. Now he has it, and he has made progress in his new town and new home. He is less violent, more verbal, wears underwear and socks (score!), and eats almost everything. The beige “carbivore” diet is gone.
His caregivers moved Jack and his housemate to a different house on the outskirts of town. It’s bigger, newer, and sits on a large lot with flowers, grass, and fruit trees. It’s a good place for being outside, which is Jack’s favorite thing. His new school is a short drive through town, and is the right setting for Jack’s learning needs.
Every one of my children is attending a new school this year, and I feel elated, if also terrified that they (with autism and anxiety) will be swallowed whole.
I’m also teaching a new curriculum this year at the University and feel the same sense of newness. I’m at the cusp of good things, too.
We are moving onward.
I’ve had a trying week for various reasons. Long story short, just days before the first day of school, we had to move our 4th grader to a new school. It was unexpected, but necessary. It stressed the heck out of me, but it was the right move and I’m peaceful about it.
The last week of summer is the hardest for me, because I am getting my teaching materials ready and driving to the university for faculty meetings and such, but my kids are still home, and they still need all the same things they’ve needed all summer when I was able to be fully present.
Lots of people mourn the end of summer, but I love fall, and back-to-school is particularly delicious for school nerds like me. I’m happy for the change, but the transition is anxiety-producing for the people in my family.
This summer has been complex. We have been able to travel more than any other summer ever. We have begun to make slow and steady progress on repairing our beat-up house. We have had far more daily downtime and peacefulness.
We have also been mourning the loss of Jack as a member of our household. This has not been an easy thing. Grief has been my weary companion this summer. I’ve floated on a river of sadness, letting the change in our family wash over me and through me. I’ve let myself feel the trauma of not having my special-needs thirteen-year-old at home. I’ve opened myself to all the hurt and all the emotion.
So this summer has been extraordinary, but also incredibly hard.
Jack left our home for full-time care.
Home life stopped being a constant hurricane.
We took vacations.
I turned 40.
Henry started driving.
We missed Jack.
We felt empty sometimes.
Jeff and I celebrated 20 years of marriage.
All 4 of my kids are attending new schools this year.
We have experienced change and are bracing for more.
I went to the temple this afternoon in an effort to dial down my own anxiety. It worked. It worked so well that I came home and passed out on my bed for two hours.
The moral of this story is, I suppose, ask God for comfort when you need it, eat a chocolate shake (which I also did today), and take a nap for Pete’s sake.
Life will look better. It just will.