Author Archive for Megan

Suffer the Little Children

Last night I dreamed about Jack. He was at his new house doing Jack things. He was playing and was happy. That was the entire dream. Short and fuzzy, as far as my dreams go.

Nevertheless, it was kind of a little gift.

My visit last week with Jack was brief, but thoroughly peaceful. When we got there and I saw him, I realized my hands were shaking. Too much anxiety festering, I guess, about the new placement and my separation from my son. He went through his Easter basket, separating out all the Reese’s so he could eat them first. Some things never change, by which I mean Jacky’s passion for peanut butter cups will be eternal. He latched quickly onto his two handheld fans that Charlie and Truman found for him at Target, and he was pretty jazzed about the bubble machine, too. He was utterly disinterested in the new clothes and sandals we brought. When I tried to sit by him, he gently pushed me away with one finger, haha. Teens.

Being in his new home, seeing him calm and peaceful, and talking to his house manager steeped me in a feeling of rightness.

Though I was literally quivering when we arrived, by the time we left, I felt amazing–like a human manifestation of calm. Where before I had been full of trepidation, I was now channeling the lovely peacefulness I felt at seeing Jack’s new situation.

Sometimes I think about the number of people on the earth, the number of people in Utah, the number of people in Utah who have autism or a child with autism, the number of people in the university where I teach writing, the number of people I know whose lives are a series of ongoing struggles, the number of people in my midst who face traumas and heartache even greater than mine–and I wonder how God knows us all. And how can He know us deeply. How?

I’ve been reading in 3rd Nephi about Jesus’s visit to the Americas after his crucifixion. It’s a tender handful of chapters for me, particularly the part where, after he says he is leaving to return to his Father, the people visibly yearn for him to stay. And because he is our Savior and brother, he knows this, is filled with compassion, and stays. His presence is the best gift.

Then, he asks the people to bring to him all those who are sick–in any manner, so he can heal them.

This passage where Jesus heals those with various illnesses and disabilities used to just do me in. Ugly crying, a sense of helplessness, and frankly raw jealousy–this is where I used to go when I read those verses. I wanted it so badly for Jack. For me. When Jack was little and I could not envision a happy and viable future for us, reading this account was basically painful.

This time when I read this passage, followed by the account of Jesus blessing the little children, one by one, I felt something different. It was more of a swelling–an appreciation for Jesus’s love for each person. He blessed the children one at a time. They were individuals, not merely a group. They were important to him and he made sure they knew it.

I did weep through this recent morning Book of Mormon study, but this time it wasn’t because of sorrow and envy. It was because I straight up knew that Jesus sees us, especially those of us who are suffering, powerless, vulnerable. He knows our hardship, and because he understands, he imbues us with power–his power–when we follow him.

God knows us because he’s the Father of our spirits. Jesus knows us because he experienced all human suffering, descending through that unthinkable pit so he can stand beside us, helping us to shoulder our burdens.

He’s so good. He’s so kind. I felt it as I read about his visit to the people of the New World.

He weeps with us, as he wept with the people in 3rd Nephi. He isn’t distant, removed, unfeeling. He is with us.

I love him for comforting me in the face of uncertainty and sadness.

I love him for giving me power to keep going, and confidence to keep trying.

I love him for knowing my Jacky, and doing the same for him.

 

 

Adjustment Period

Do you ever take a meditative step back from the busy parts of your life and wonder, “How did I get here?”

Because I am doing this as I look around at the evolution of life as I know it. My heart has been asking my brain, “How did my life evolve into this thing where my super vibrant not-old father died and my special-needs teen son lives 3 hours away in other people’s care? And, by the way, I have a sixteen-year-old who dates and drives, wha?”

I guess I am still processing what has transpired. I’m grappling with the remains of these events.

It’s not that I have a problem with change, generally speaking. Life evolves and there is often beauty in the alteration. But there is also a certain sadness in acceptance.

This is just to say, I’m adjusting to Life As It Is Now.

It’s a stormy day, I’m reading a downer of a John Green book, which apparently makes me weirdly reflective.

 

Autism Parenting in Three Vignettes

First

In St. George last week, we went to buy the boys some shoes. Charlie tried on a few pairs, vacillating between black and white checkerboard Vans and Nike high tops, finally settling on the Nikes. Done. I mean, definitely opinionated, but he liked all his options, so basically easy.

Meanwhile, Truman tried on fifteen pairs of shoes, each which he had to test by running the length of the store. If they fell off (which most of the sandals did), they were no longer contenders. He then had a low-key tantrum and said all he really wanted was shoes that light up on the bottom. So we went to another shoe store, where there were exactly two pairs of shoes with lights on the bottom, both with laces instead of velcro (he can’t tie laces), and both ugly as sin. He chose the black pair, which basically looks like an orthopedic shoe on top with an enormous white bottom lined with LED lights that can change color and blink. They are hideous, and I could not hand over my money fast enough. Even though I will be the one tying those ugly things.

Here’s the thing: My children are like me in that they know exactly what they like and what they want. Trying to talk them out of their opinions is fruitless and something I don’t recommend. Also, having opinions and knowing what you like and what you want are things I like about myself, so why would I squash this in my sons?

I gave up years ago on trying to control my kids’ fashion choices and I have never looked back. There is freedom for me, my boys, in letting you wear those trash light-up shoes!

Second

Last night before bed, Charlie stood in our bedroom doorway and argued extensively with Jeff and me about wanting to wake up extra early.

“Can I set an alarm?” he asked.

“No,” we responded. When he sets alarms, they tend to go off at 4 AM and wake everybody up.

“I want to get up at 6:50,” he repeated.

“We will wake you up at 6:50,” we assured him.

“I don’t believe you,” he deadpanned.

“You can trust that we will wake you up early, even though it’s the first day back to school after Spring Break, and waking up early is going to be hard,” we explained.

“I don’t trust you,” he spat, at which point there was much eye-rolling and sighing (from me).

This conversation continued for a good four minutes longer than it needed to.

Jeff dutifully went to Charlie’s room and attempted to wake him at 6:50 this morning, which was impossible because Charlie was dead to the world and unwilling or able to be roused from his deep sleep.

Third

My mom, the little boys, and I visited Jack in his new group home on Sunday. I know that I am healing, because when I saw Jack this time, I didn’t feel sad. I felt really good. Here are the pertinent points:

  • Jack is calm–the calmest I’ve seen him in several years.
  • His home is lovely and peaceful.
  • His house manager is terrific. Just perfect, actually. Jack has apparently taken a real shining to him, and he told me he already just loves Jack.
  • Jack’s neighborhood is quiet and well-kept, with beautiful natural surroundings. Everything about it felt like the right place for our special teen at this point in his life.
  • Placing one’s young teen in residential care is not a typical parenting step. But it’s my parenting experience. Yesterday, I felt a fullness of acceptance for the skiwampus path that Jack and I are traveling together. It’s different, but it’s okay.
  • When I left, that elusive metaphysical cloak of relief drifted from the sky and landed on my shoulders. It wrapped me up and I exhaled.
  • At this moment, all my worries are gone. I’m as calm as Jack. He and I are still waters, reflecting the beauty of the lives God has given us.

 

These Are a Few of My Favorite Things

In no particular order:

1. Lipstick. I heart a bold lip, tho.

2. When the sun shines and the trees bud. All seasonal change is magical.

3. The ability for humans to change. I’m now in decent shape, I eat more vegetables, I spend more time reading than on social media, and I’m hopeful for the future. All of this demonstrates enormous change on my part. People can change, when they decide to. Whoa! Also, huzzah!

4. Being in one’s forties. It’s the best kept secret, guys. I feel like a true grown-up. I’m done with pregnancy forevah. My children are growing into cool, less neurotic people. Everyone sleeps through the night. I know what I like. (And I like being 40 *gasp*).

5. Mint brownies from Kneaders. I am powerless against them. If you eat one, you can’t ever go back. Because now you know they are crack and you’re doomed.

6. Overcoming grief. Not the “having to experience grief” part, just the “overcoming it” part. Learning that grief is the worst, but I’m nevertheless capable of dealing with it is a bit empowering. Having survived the twelve-month- grief-cluster-cuss and emerging from it as a pretty happy person makes the concept of grief slightly less scary. I’m bigger than the worst things that have happened in my life (this is a thing I wouldn’t mind shouting from a hilltop while spinning and wearing a dirndl).

7. My students. I love them. They are so darling. Teaching university students about writing is energizing and so much fun. At the end of every semester, I decide I will never love another group of students like those in my current classes. And then somehow I do. It’s not unlike how I feel about books. I love them all and I want more because I will undoubtedly love them too.

8. Having another driver in the family. It’s just freeing, you know?

9. A Man Called Ove. I just finished it and I’m feeling pretty great about humankind, rn.

10. Experiencing a light, frothy, bubbly feeling while driving on a Tuesday afternoon and wondering what this rare emotion is and realizing it’s…happiness. I like happy. It’s effervescent.

Elastic

It was exactly one year ago that Jack’s new life plan was set into motion. General Conference weekend last April I had NO INKLING WHATSOEVER that our lives would change so drastically and so quickly, literally beginning just days after conference.

I’ve been thinking of all the things that are different about life now versus life then, as well as the lessons I’ve learned. Of course, I will soon expostulate on this, as one does. But first, allow me to discuss a photograph (the one above).

I have this picture beside my bathroom sink of Jack at eighteen months old, sitting beside three-year-old Henry. I had it taken at Target’s photo studio a dozen years ago one fall day. Jack’s hair is big: curly, gingery, soft, shiny. He has a soft little baby face and a wet mouth that is half smiling, half ready to wail. He’s so little.

I look at this picture every time I brush my teeth. In it, I see the passage of time, skipping over a dozen years in a moment. I feel as though I see Jack’s innocence and sweetness in those pillow-y baby cheeks.

He has the same soul today as he had then.

As the years fall away, so does my anxiety, my inadequacy, my struggle against the repetitive pulling tides of difficulty. But at one point in my journey as Jack’s mother, I couldn’t see his limitations for what they are—an orderly, intentional plan for his life. Purposeful. Deliberate. A gift. I only saw the loss.

Because of what has transpired in the last year, I don’t see loss anymore. It’s not a void, it’s a fullness. My spirit feels educated.

When I see Baby Jack smiling and sitting by his big brother, I see life. It’s a big life. Sometimes it feels restrictive, clamped down by hardship. But Jack’s pure freckled face with the milky skin shows me expansiveness. It is growth. It is learning through experiencing.

Because I have Jack, I am closer to God. This isn’t because of anything I have done. It’s because Jack’s condition has leveled me, humbling and bringing me to a point of meekness, by which I mean a place of deep yearning for God’s power in my life.

With time, I’ve shed the old mental image of the ideal life I had constructed in my mind. Hard things that I couldn’t manage alone compelled me to ask God what He had in mind for Jack and for me. “Tell me what to do, and I will do it.” If anyone ever had a prayer on repeat, this was mine. It still is.

Jack’s face has morphed a great deal in the last year. The tiny face in the photograph is now that of a big, burly teen. His face, our lives, they evolve.

The content of his spirit is as vibrant and valiant as ever. But my spirit has changed. It’s softer. Elastic. It is no longer enclosed like a fist, but open, like an outstretched hand.

It is receptive to change. It anticipates growth.

 

Jacky is Sweet

Jeff and I spent 75 minutes on the phone this morning for Jack’s intake meeting with his new service provider.

This is where we tell them stuff—like that Jack adores vacuums and going for rides in the car, and that he straight up cannot handle crowded, noisy places, particularly which involve waiting in line (Someday I will tell you about the time I took Jack to Disneyland, for real. And we lived. I know.) We mention things at these meetings like “you will need to put up plywood on his bedroom walls so he doesn’t kick holes in the drywall and constantly pick at it.” And “Jack does great with big burly male staff, also watch ya noses (!) because his big hard head has been known to bash into them at times.”

You know, your basic info.

What goals do we have for Jack’s behavior? When they asked us this, Jeff mentioned getting him to wear shoes. I just wanted to say, “not hurting people or things.” Is it a tall order? Perhaps.

I felt one hundred percent calm and peaceful during this meeting. I have continued to feel settled and happy about Jack’s upcoming move to his new placement.

We told them all about the bad behaviors. We also told them how cute he is, and sweet, and purely loveable. Our support coordinator mentioned that he visited Jack this week and talked to a female staffer at his current home who has taken the brunt of Jack’s aggressive behavior, of late. During their conversation, she cried, saying she will simply miss him. This is a woman who could be glad to be rid of Jack and his behaviors. Instead, she was emotional, thinking of the real Jack—the person he is inside, who she loves.

Here is the thing: everyone loves Jack. Everyone who really knows him, loves him. He is so darling and precious, goofy and loving.

Everyone says such things about their own child, as they should. But Jack is FOR REAL darling and precious, in spite of those pesky behaviors.

He is TOTALLY goofy and loving, despite being nonverbal and developmentally delayed and frustrated.

Jacky is sweet. He is all bony elbows and giant feet and freckles and red hair and blue-green eyes and sweetness.

He is good, even when his behavior isn’t.

Jack is perfectly himself and I cherish all of him.

The Next Right Step

  1. I can eat again.
  2. It’s Jeff’s birthday and we get to have a night out, so yay us.
  3. Physical therapy is making me huuuuuurt.
  4. I am now one of those people who complains about sore body parts.
  5. And talks about exercise all the time, gah.
  6. I’ve been on the phone with the support coordinator lots in the past week.
  7. We have discussed and then discussed some more, all the options for Jack.
  8. There were four responses to his call for service, meaning the search to find a new service provider for Jack’s needs; three aren’t the right fit for him. He would not succeed in those scenarios.
  9. The fourth, in the southern part of the state, is the only viable option.
  10. I have prayed a lot that the fourth option would be approved.
  11. Like, a lot.
  12. Muchos prayers.
  13. Many people have suggested we look into the state developmental center.
  14. A few things to know about this option: a) We are aware of it and feel it is ideal for Jack, however b) it’s kind of impossible to get into until you’ve exhausted all other options and are c) preferably not a minor. I personally believe Jack will live there someday and it will provide the care he needs for a long time. But today is not that day. And we need something else now.
  15. Other people have said they thought Jack’s current placement was meant to be and they couldn’t believe it wasn’t working now. We do believe it was the right first step for getting Jack into residential care. But it’s not the last stop for him. His needs are evolving and incredibly intense.
  16. Sometimes people will comment about the endlessness of Jack’s ongoing issues, like in a caring, sympathetic way. I’ve found that this doesn’t make me feel sorrowful or persecuted as it once did. Instead I’ve learned that now I see Jack’s care not as something to solve, but as a process which will continue and require faith and major problem-solving skills for the duration of his life.
  17. I guess I see the challenges as a series of steps we are taking. It’s a path of stepping-stones and they lead waaaay into the distance.
  18. Another realization: I don’t feel sad and exhausted about this, as in years past.
  19. Which is really great, huzzah!
  20. While I graded papers by the fire this morning, the support coordinator called with this news: Jack has been approved for the facility down south.
  21. Miracles happen. For real.
  22. THIS IS A MIRACLE.
  23. God loves Jack and knows what he needs.
  24. I reflected and realized that I never doubted that God would present us with a plan.
  25. I did, however, fear that the next step would be difficult to swallow. And swallowing has literally made me gag, of late.
  26. Which maybe does mean that I actually am a tad fearful of the length and difficulty of that stepping-stone path, the one that represents Jack’s life.
  27. And I had a stress dream wherein I went to class (the one I teach) an hour late and couldn’t remember anyone’s name. Also, I had no lesson plan and I couldn’t make the computer or projector work. So there’s that.
  28. But back to the stepping-stones. Through this tumultuous process, I’ve learned that because this is mortality, there is no final solution.
  29. There is no arrival at the right place with enduring perfection and happily ever after.
  30. There is only the next right step.

Books, Babe

Wherein I offer *tiny* book reviews of works I have recently read.

Books set in war time:

Beneath a Scarlet Sky by Mark Sullivan. Wow. WWII in Milan. True Story. Going to be made into a movie. They kind of were the greatest generation.

The Girl You Left Behind by Jojo Moyes. Set during the Great War in France and written by the author of Me Before You. Like all war stories, this was so very sad. Good, but hard too.

YA Realism:

The Sun is Also a Star by Nicola Yoon. This is one of the best YA books I’ve read in recent years. Natasha and Daniel are two teens in New York City facing deportation and lots of family issues, all while trying to establish their own independence. This novel gives credence to the concept that everyone in the world has a story and that we are all connected to each other as humans. It is beautiful.

Far From the Tree by Robin Benway. This is a National Book Award Winner filled with teen characters that I completely loved. The adult characters weren’t as fully-realized. It’s about three biological siblings who find each other as teenagers. None has a perfect life, but their sense of family and identify grow and evolve in an inspiring way. Salty language warning.

YA Fantasy:

The Queen’s Gambit Trilogy by Beth Brower. Super addictive. A sweeping world-building series. Kind of like Game of Thrones, but without dragons and with a PG rating. I raced through these books and instantly wanted more.

Blood Rose Rebellion by Rosalyn Eves. This novel by a fellow Segullah sister (!) begins in Victorian London, where magic is the primary force by which people achieve status and wield power. Much of the book takes place in Hungary, and is a layered tale which explores the roles of innate gifts, choice, and social strata in determining the outcome of one’s life.

The Hazel Wood by Melissa Albert. Super creepy and creative horror story. The first two thirds of the book are terrifying and amazing; the last third kind of goes off the rails. Quite weird. The fairy tales in this story are real and uber dark. Again, beware the salty language.

Memoir:

Educated by Tara Westover. I am obsessed with this book. The author was raised in Idaho by survivalist, extremist Mormon parents. She had no birth certificate and never attended school. With mental illness and abuse as foundational pillars of her childhood home life, she nevertheless taught herself enough math to pass the ACT with a 28, which was sufficient to be accepted to BYU. Ultimately, she earned graduate degrees at Cambridge University and a fellowship at Harvard. Horrifying, inspiring, and BEAUTIFULLY written.

Classic:

Wuthering Heights by Emily Bronte. This is my second time reading this, one of the most well-regarded books in the English language. I figured because I loathed it the first time through all those years ago, it deserved another look. You’re probably already familiar with the story, but if not, allow me to toss a few descriptors at you: DARK, STORMY, SAD, MELANCHOLY, WIND-SWEPT, DEPRESSING. The skill with which this story is told as a tale within a tale (practically within another tale) is stunning, and the language is, well, remarkable. The Brontes WERE geniuses, you guys. And the fact that Emily died at age 30 after WH‘s publication makes her masterpiece even more tragic. I’m glad I read it, but Jane Eyre by sister Charlotte is still the best book ever. Feel free to disagree, but you will never change my mind.

What are you reading?