- 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.
- 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.
- 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.
- I made homemade, thick, soft, buttery sugar cookies. I don’t do shapes. Just circles. Whatever. Also, amen.
- 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.
- I sang “Landslide” quite a few times out loud and in my head.
- 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.
- 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.
- 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)
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.
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.
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.
I wrote a rather lengthy essay for Segullah’s journal about my process of accepting my boys’ disabilities. It was published in the September issue of the journal, which you can find here.
As I read through this piece today, I had a moment of contemplation wherein I wondered if my stuff gets tiresome for people to read. Is it all just more of the same stories? Do people weary of my life? Because sometimes I do.
I did get a genuine thrill in writing this essay though, I can honestly say. There are a few images that played in my mind as I wrote, which I felt applied with symbolic astuteness to my life: sea glass, an open door banging in the wind, a tree on a hill, a night sky with a message written in the stars.
I like this imagery. When something clicks in a piece, I feel like I’ve reached up and plucked a ripe peach from a hanging bough.
So thanks, Muse. Here’s to you.
- Voice Volume Anomalies are a Thing. Some of my people use a volume of voice that is wrong (i.e. extremely loud) in most situations. When I remind them to use a quiet voice, they stage whisper. This means we either have “bullhorn loud” or “still-loud stage whisper.” Both can be heard from a couple miles away.
- Autism Rejects Change. Case in point, when returning from my parents’ house recently, construction blocked our usual exit—the one by McDonald’s, where Jack expected fries. Jack tightly squeezed Jeff’s arm. Jack kicked Jeff. Jack shredded a bunch of napkins and papers. “Autism rejects your change of exits,” Jeff proclaimed, as I drove us to a different exit by a different McDonald’s.
- Sleep is a Big Deal. When my kids do not get to bed on time, they do not simply sleep late the next day. They wake up at exactly the same time, no matter what. Unless they are exceptionally sleep deprived, in which case they wake even earlier the next morning. I don’t get it. But it happens. When my kids do not get enough sleep, they express their exhaustion and inability to cope in the form of a succession of rapid-fire meltdowns stretching from afternoon to evening. It’s the witching hour on crack.
- Extreme Laser-Focus/Obsessive Tendencies Exist. When Truman wants a DRINK OF COLD WATER on the ride home from the cabin, but Jack has dumped all the containers of water out into the dirt, Truman will scream “I WANT A DRINK OF COLD WATER!” the entire hour drive home, except when he falls asleep when you get to your neighborhood.
- Innocence is Real. My boys on the spectrum are guileless. They are sweet. They don’t lie. They don’t try to manipulate. They are genuine without even trying.
- Progress is Slow, But Still Progress. My kids do things on their own timetable. They don’t potty train when their peers do. They don’t learn to read in the same time frame. Learning to tie their shoes and swim and dress themselves all take a great while. These differences in learning schedules once made me blue and fearful. But time has shown me that my kids learn at their own pace, but they still learn. They are making progress, even though learning some things is hard. The littlest victories mean more when they are hard won.
I’m happy to report that whatever my brain was doing when it went walkabout for all those months (those many months when I couldn’t read books because I couldn’t focus on them) seems to have worked itself out. The brain is back, baby.
Well, sort of.
This morning I prepped Jack’s meds before he woke. I made hash browns and bacon (Jack says the word “bacon” now, and requests it daily. I oblige because he speaks his request!), as well as toast and eggs. I mentally patted myself on the shoulder. “Good job, you. You’re mothering like a pro.”
But after the boys got on the bus (long after), I saw Jack’s meds sitting there on the counter. I forgot to give them to him. Jack doesn’t function without meds. I was still in my pajamas, my hair a smashed thing. Jeff agreed to take the meds to the school. I questioned my ability to raise children.
Before running errands with Truman, I first had to talk him down from an emotional precipice where he wailed and screamed about not having wifi in the car because he wanted to watch youtube kids, yo. Wah! That took some time, but with a little finesse on my part, we were on our way.
The errands took longer than I planned. My quick stop for groceries became a major shop. I need to learn that when you have oodles of boys around, including teens, there is never a “quick trip to the store.” You always need a piled-high cart. The end.
We were late for Truman’s first day of preschool and I hadn’t fed him lunch. I pulled a fun-sized Hershey bar and a handful of Wheat Thins from the grocery bags and told him to snarf it up. I am an inspiration.
He arrived 15 minutes late for school and asked where all the friends were. “Well,” I thought, “They are sitting at circle time well-fed and well-groomed because their mothers had it together.” Truman had chocolate smudges on his pants and shirt. I wiped the chocolate smears from his mouth and took First Day of School pics all alone outside the preschool. There is no interference from other kids when you show up late and the place is a ghost town. Silver linings.
But. This tale of questionable parenting is merely a side note to this post’s initial purpose, which is that I am once again able to read books. Huzzah!
I inhaled Counting by Sevens by Holly Goldberg Sloan, which I straight up loved. It’s a young adult tale of a misfit girl named Willow whose life falls utterly apart. The way it begins to mend is a beautiful thing. The characters in this book were delightful. It felt so real to me.
I’m obsessed with colonial America (and any period piece, frankly) so I enjoyed Flight of the Sparrow by Amy Belden Brown. It’s a novel based on a true account of Mary Rowlandson of the Massachusetts Bay Colony who was kidnapped by Native Americans in the 17th century. A lovely read, filled with difficult people and situations and ideas, but which mirrors the complexities of life.
Perhaps it is because my heritage is English, that I have my deep-seated fascination with all things British and its history. Who knows. But I will never get enough Brit lit. I died over Wolf Hall. I adored The Last Kingdom. Ditto, The Buried Giant, Hild, and Katharine. Thus, I am now reading about the Wars of the Roses, circa Henry VI. I just finished Stormbird by Conn Igullden and I’m looking forward to Margaret of Anjou next. I’m really glad I have hot showers and anti anxiety meds and a free land to live in, but man, England in its early centuries captivates me.
I picked up A Memory of Violets by Hazel Gaynor, from the Costco book table, and while it feels a little Hallmark-special to me and hence a tad saccharine and predictable, I can’t say it’s unpleasant. It’s about impoverished flower sellers in London in the late 19th century, a la Eliza Doolittle/Pymalion. But less Audrey Hepburn and more time-hopping with physical disabilities thrown into the mix. I’m not far in yet, so I can’t say much more.
Books are an old, dear friend.
I’m so glad we are back together.
After posting my very very super deep thoughts on life and challenges on Friday, I had the worst Saturday ever with Jack, which is essentially a regular Saturday (insert cringe-face emoji). It was long and hard. Jack could not be placated. The day went from Jack shredding papers in my car to Jack peeing off the deck to Jack breaking all the electronics’ charging cables to Jack punching people because he was frustrated and we don’t know why.
At 4:30, we packed it up and drove up the canyon to Joyce and Peter’s cabin praying for a change of behavior with the change of scenery.
It worked. Aside from some in-car antics (I drive now, always. Jeff acts as bouncer), Jack perked up and the naughtiness ebbed. I took a hike with Charlie to Moose Poop Ledge and the water tower through the orange dusky glow of a singularly difficult day.
As I breathed in the cool air that smelled of rain, I felt partially renewed.
But before that time, while driving and lamenting my inability to break the cycle of Jack’s destruction and aggression, I wanted to opt out. To pour the bitter cup out on the ground and watch it run in rivulets away from me.
The pressure of such an enormous, ongoing weight bore down on me relentlessly. “Must God drive us to the brink of insanity to accomplish his purposes?” I sobbed to Jeff.
From the backseat, Charlie told me to please stop crying. Autism can look like bossiness in the service of righting things that seem wrong, like your mom driving, crying, and having an existential crisis.
On Friday Jack had a well-check with the pediatrician. Our Dr. M is an advocate and support to our family, and Jacky loves him dearly. They sat next to each other on the tiny green kiddie chairs by the window. Jack smiled the entire time.
During our conversation about Jack’s needs and struggles, Dr. M told me that of all the patients he has with disabilities, Jack’s are the most extreme case of both intellectual disability combined with severe behavioral issues. He has patients, he said, who are medically fragile and intellectually limited but who are not aggressive. He also has patients with autism who have challenges but who can speak, and who do not destroy property nor hurt people to the extent that Jack does.
He said this plainly and truthfully, and I love him for it. It did not feel like condemnation of us as parents, but as validation for the honest hardships that disabilities like Jack’s present. We are at the intersection of the most extreme cases of developmental delay, behavior problems, and the rigidity of autism. We are beyond the pale.
This is why it is so hard. Thank you for underscoring that what we do IS HARD, Dr. M. Thank you (insert kissy-face emoji).
Much of my angst comes not from Jack’s limitations, which I feel we have accepted and are working with and around, but from the limitations which befall the rest of our family because of them. We have services, but there are gaps in the help we receive. It isn’t constant, although Jack’s behavior’s are. This affects our whole family.
I could outline in detail the lengthy list of things that are grating on me, but I won’t. Most are unsolvable, but a few things can be addressed, and Jeff the Engineer and his naturally trouble-shooting brain went to work designing solutions. We will work on the things that we can change.
Anyhow, I awoke this Sunday morning with a sense that this day was going to feature me dragging myself through an emotional wasteland. I listen to old General Conference talks in the morning while I get ready and this morning, I noticed that the next talk in my queue was Jeffrey Holland’s “Lord, I Believe.” He gave this talk three years ago and it stuck out to me because he opens with the biblical account in Mark of a father who brings his afflicted child to the Savior to plead for help and relief.
Elder Holland says, “With no other hope remaining, this father asserts what faith he has and pleads with the Savior of the world, ‘If thou canst do anything, have compassion on us and help us.’ I can hardly read those words without weeping. The plural pronoun us is obviously used intentionally. This man is saying, in effect, ‘Our whole family is pleading. Our struggle never ceases. We are exhausted. Our son falls into the water. He falls into the fire. He is continually in danger, and we are continually afraid. We don’t know where else to turn. Can you help us? We will be grateful for anything—a partial blessing, a glimmer of hope, some small lifting of the burden carried by this boy’s mother every day of her life.”
When he gave this talk three years ago, I thought it was going to be about special needs children, and I listened intently. But the talk instead unfolded as a discourse on finding faith amid doubt, and using faith to overcome hardship. I remember feeling disappointed that the discussion on the struggling family with a disabled child didn’t continue, but switched to the topic of building on one’s current faith.
Like the parents in this story, our struggle never ceases. We are exhausted. As Elder Holland says, “We will be grateful for anything—a partial blessing, a glimmer of hope, some small lifting of the burden” we carry. He spoke my current thoughts, and he did it years before this day when my crisis was real and my desolation heavy.
As I listened today, I realized that this account from Mark mirrors my exact situation, telling me exactly what I need in my ongoing trial. (*Thank you, God, for prompting Elder Holland to give this exact talk three years before I was ready for it to be a balm on my burning soul*).
I recognize that it isn’t fashionable to say that Jesus is the answer, but he is, in reality, the answer. He is the source of all renewal, the only way back to wholeness.
My family watched the third Indiana Jones movie outside this weekend to mark the end of summer. You remember how it’s all about the search for the holy grail because whoever drinks from it will have eternal life? I kept thinking, “You have it all wrong, Indy and the pursuing Steven Speilberg villains. It’s not the literal water that you drink from an ancient cup that heals you. Duh. Jesus is the living water, people. He is the way to eternal life, which isn’t here, but with God. Nice try, Hollywood, but not quite.”
I need faith. My life requires it. Faith to believe God knows us and gets it. Faith to draw personal strength from Jesus’ atonement.
I need strength that exceeds my limited mortal abilities to raise my children.
I do believe. I honestly do believe. “Lord, help thou mine unbelief,” I could say in unison with the beseeching father in Mark.
Help me where I lack.
Deepen my faith so, as my children’s mother, I can use it to draw from an eternal well of wisdom and strength.
My friend Shirley said something on Sunday that has stayed with me this week.
She was giving a lesson on peace in relief society and told a random little side story about a time when she was walloped with trials in her younger years. Prior to that time, she said, she saw challenges as merely “things to get through.” It wasn’t until this intense period of multiple trials that she began to see them as transformative.
I keep thinking about this because it’s an amazing lens for viewing the hard stuff.
The most difficult things we face in life have the very real ability to refine us. Refine us. Yes, please. They can make us better, kinder, wiser, stronger, more tender, and more focused on the vital things. They can also harden and embitter us. I suppose we decide the outcome.
It’s kind of embarrassing how many years of hard-core special-needs parenting it took me to understand this principle. To my credit, I’m finally figuring it out. I went from looking sideways at the differences in our family compared with other families, to trying to stay focused on looking inward, upward, and forward.
It is better to pass through sorrow that we may know the good from the evil.
When my paradigm shifts from “holding on” or “getting through,” to experiencing, learning, and changing, suffering becomes a tool for growth. A means of becoming. Suffering is usually misery, but it can enlighten.
If we wanted to avoid conflict or challenge, we would’ve stayed in heaven, or in the garden. I really think we knew exactly what we would encounter in mortality and we still yearned for it and celebrated when it became a reality.
I used to wonder if God was watching me from a distance, disappointed in my lackluster performance. Now I feel more as though he is close by, orchestrating the development that I myself requested, that we worked together to plan. The veil is an awful thing, at times. The forgetting makes us stupid, but I guess that was the point.
I’m feeling less afraid of what is to come, of what might happen. I’m not focused on worst-cast scenarios. Life’s supposed to be hard and unpredictable.
Now I’m fostering a neutral sense of being open to whatever may come my way in this crazy mortal realm. Of course I have to remind myself this all the time, because fear seems to be a default human state.
It’s that old faith versus fear showdown. My family life is hard. Really hard. But my faith is deeper now.
It’s one of those days.
The kind where Jack is amped up on a hormonal hyperactivity cocktail. Where it’s gray outside and gray in my head. Where I found a big poop on the deck. Where Truman is screaming about basically everything. Where I’m unsure how everyone everywhere accomplishes so many things because I am just muddling through. All of it.
Some days feel like I have a sucking chest wound, except it doesn’t heal. It gasps and weeps and bleeds and I pretend it doesn’t hurt, because it is always here and no one wants to hear about the ubiquitous chest wound that will never go away in this life.
Lifelong severe developmental disabilities aren’t like childhood cancer or a car accident, a contained time of tragedy that everyone can rally behind with fundraisers and donations and service projects and magnanimous shows of support. It’s not like that when it’s all the time and pervasive and WILL NEVER GO AWAY. No one wants to get caught up that mess.
Just to be clear, I do not want a fundraiser or donations, et al. That’s not what I mean.
What do I mean? It’s painful to articulate, but I’ll try.
Disabilities isolate. They make us “other.” Disabilities exhaust. They do not take vacations and leave us alone for periods of time. Disabilities distress, emotionally. Disabilities remain. Despite celebrity and organizational claims that autism is “curable,” it isn’t. Brain differences can’t be fixed with all manner of therapies, just because we want them to be.
Some days I feel the added burden of having not only children with disabilities, but a child with severe limitations and aggressive behavioral issues. Our trials are ugly and they aren’t fixable. It’s that old, lurking, shameful sense that our disabilities aren’t sweet and gentle. They won’t go away in a month or a year, or ten years. Our challenges aren’t pretty and they aren’t fashionable. (I will venture to say that most people with disabilities probably feel this way. Perhaps people with challenges of any kind feel this way. It’s all difficult. The End.)
Jack has been smashing our dishes this week. I found several green Ikea plates in pieces in the window well. Then he started pushing them off the counter, *crash*. Sometimes when he gets frustrated, he bites himself or whacks his head against his knee. This self-harm is new. I hate it.
Ikea dishes are cheap, which is why we buy them. Poop in the backyard is easily fixable. I’ve cleaned it up, but I’m left with a sense of emptiness at the prospect of filth and destruction and attacks on himself and those close to Jack in perpetuity.
I’m trying to turn inward and upward to find the peace that I know exists because it’s dwelt with me before. I am reading in Exodus and in Helaman every day. My prayers are focused and direct. I re-read my patriarchal blessing and went to the temple.
I’m still in the lowlands, but I’ve had a few insights flicker at me from up ahead. They all have to do with my life before this life. Things I accomplished. Things I chose. Things I wanted. Things I’m capable of. I feel that God is telling me that there really is more than right now. He is saying, “You don’t remember it, but there was a whole life before this, and you wanted to come here and grow.”
I feel he is also saying, “You can do it.”