- It snowed, a bunch.
- I ate Cafe Rio with Jeff. We do lunch dates now.
- The physical therapist went from fixing my back to fixing my neck and now my knee, which is caused by my hip. Srsly tho.
- Jeff and I joined a gym, a previously impossible thing, now possible thanks to miracles.
- A person from the school warned me that Jack would likely be suspended from school because of behaviors.
- Jack was suspended from school because of behaviors.
- I lost a bunch of sleep over this development.
- I wrote a frustrated essay about why my nonverbal, disabled son being sent home from his special-needs school for being a person with special needs and related challenges is ridiculous.
- I showed it only to my writing group, who gasped, groaned, and laughed in all the right places.
- I had 700 conversations with the psychiatrist’s office, the university’s neuro-psychiatric hospital, the school, myself (in my head), Jeff, and God about the developments of the week.
- Jack went back to school the next day and was, according to his teacher, basically a peach.
- Henry made dinner one night, under duress. It was pancakes and sausage. He’s learning to do things, because I am teaching him to fish instead of giving him fish.
- Truman wore a pull-up that stayed dry, two consecutive days. Today, he’s in undies, and they are dry. And when he does a number two in the potty, he gets to buy a kid’s tool bench. This is big. Very big.
- It’s not a three-day weekend. This is good news for all the special-needs moms and dads out there.
I seem to be averaging one day a week when I struggle to do basically anything. I feel as though I can plow through all my caregiver responsibilities all through the other days and the weekends (still not restful for us, yet), but it all catches up with me about one day in seven. Today has been that day.
I move at the speed of a sloth. I am as motivated and energized as a tranquilized bear. I have the aesthetic of a hermit. The thought of human interaction exhausts me. I can wade through laundry and cleaning the kitchen. I can slog through calls to doctor’s offices and the school nurse. But beyond that, I’m somewhat vegetative.
It doesn’t help that it’s a wet, grey day and I am putting off all the grading I have to do.
I wonder if this is part of the cyclical nature of enduring care-giving. It is an ongoing responsibility. Even with helps and supports, it is ongoing. And when the helps and supports get sick or have car trouble or take time off, the entire weight falls right back on us. When I sit and ponder on the endlessness of this, I get weary, and a little hopeless.
But if I acknowledge the sadness and the weariness, keeping my focus on just today, I can keep the spiraling thoughts away, for the most part. If I give myself permission to have a low-energy, blue kind of a day, I seem to recover. After approximately 24 hours.
Then I wake up the next day and get back at it.
Perhaps this seems like an odd thing to write about. Who talks about their lounge-wear/stormy/blah days? Well, I guess I do. I felt for a long time that these days were a sign of weakness. Now I see them as necessary. Perhaps not one in seven, but at least periodically.
Days like today make me glad I’m not a TV or radio personality whose job includes perpetual cheeriness. I can’t fake bubbly.
I have calmed down considerably. The guys and I had a good night’s sleep, and I woke up refreshed enough to clean up the ten thousand diapers, five thousand hangers, and all the clothing from the entire closet that Jack and Truman shoved under the bed, behind the bed, on top of the bed, and next to the bed last night before bedtime.
Children shredding a room does offer the silver lining of allowing you to clean the shiz out of it, rather than simply tidying. I stripped the room to its bare bones, tossing a good amount, donating a bunch, laundering a lot, and simplifying the room even more.
I have the boys quilts drying outside which means they will smell like heaven. I have my window open a little, meaning I’m inhaling whiffs of heaven. Spring feels close, though it’s going to snow this week.
Jack is feeling better, because this is day four of his antibiotic. And Junior took them all to the park, so I am going to get on my knees now and give thanks.
Tonight, I return to this not-funny blog to write things. It’s been an emotional weekend for a bunch of reasons, none of which I will discuss here. Some were happy/thankful emotions, and some were the opposite. It was spectrum-y, you could say (as my cousin Melissa DOES say). Tonight the not happy/not thankful emotions seem to be winning.
Jack’s ear is infected and he has strep. He may have had it for several days before we got it diagnosed and treated. This is a recurring issue—my stupidity in figuring out when my nonverbal child is sick. He can be sick for the better part of a week because it’s really tough to distinguish between bad behavior and sick behavior. I seem to be especially dense in this area. I need a pediatrician to board in the basement so we can borrow his or her diagnostic and prescribing skills at all hours, including holidays.
And I’m assuming my brain is fried at this point, because a) I don’t care about anything and b) all the usual helps aren’t doing it for me. I did watch the complete 2011 version of Jane Eyre, which helped a little. I love it so. But otherwise, I’m an automaton. I’m basically dead inside.
By dead inside, I mean I have a list of about twenty-five points about special-needs parenting which I am ready to start shouting about. If I were Jack, I’d be looking for lamps to throw off the deck. I wouldn’t mind smashing something, but it sounds like a lot of work. And a big mess, and I don’t have me waiting in the wings to clean it up while I decompress elsewhere. I mean I do have me, but me doesn’t want to clean up any rage-messes that I make.
I’m not going to list the bullet points which are making me furious. It’s counter-productive. I will, however, close with a list of random observations.
- Charlie is being so good. Since his last med bump, he seems to be less rigid, more flexible. He will pray at home and at Primary again. There were years where he refused to do it.
- February is getting me down. It’s just blah, you know.
- I am excessively worn out by the sensory demands and behavioral idiosyncrasies of three separate SN children. It’s like an insane joke—how can we make this woman’s life so bizarre and difficult that it’s laughable? Hahahahahahaha. Joke’s on me.
- I have a stronger core and, because the exercises make me want to throw up, I’m eating less. It’s a good diet.
- If anyone asks me to do anything at this point in time, anything besides stay alive and tend to my needy brood, I am going to close my eyes for a good ten seconds, exhale loudly, and try calling down lightning bolts and gale force winds.
I feel like this blog has stopped being funny, perhaps in the way that it stopped being excessively whine-y or compulsively approval-seeking, even when I didn’t realize it was. When I read to my students things I’ve written, I stick with the funny stuff. College writing classes aren’t really the place to talk about Jesus, at least not outside of the BYU. I never went to BYU, so I truthfully don’t know if religious subjects come up in all types of classes. When it comes to BYU, I know nothing, Jon Snow. I know as much about BYU as I know about potty training boys on the spectrum, which is to say, not a lot.
There was a time when I would try to take the horrible, poo-smeared experiences in my daily life and turn them into something funny. It was a method of coping, of taking control of an awful thing and consciously shaping into a story designed to make people laugh. But readers, I’m not a humorist. I’m just me, living this life and writing it down the way God tells me to, which may make me and this too much for some people.
I get it, and that’s okay.
On that note, Jack woke us up at five this morning. Even if I wanted to be an early-riser to exercise in the cold, dark, predawn (I don’t), I couldn’t do it because Jack likes to frequently get us up at five am for shenanigans. Five am mornings throw the rest of the day into shambles. We can sometimes get him back to sleep for awhile before the bus comes, but the morning is nevertheless shot. Everything is off-kilter. Autism rejects the household’s wish for a regular, seven am wake up time. Jack is grumpy the rest of the day. I’m impatient and irritable. Bedtime is a hazy mirage an eternity away.
Jack had to be restrained FIVE TIMES today. Twice at school and three times at home. This is what the five am rising does to us. It means Jack breaks the TV remote, tries to break windows, throws chairs down the stairs, and tries to hurt people.
When I drove to Costco this afternoon, I heard this line in a song on the coffee house acoustic channel (me likey) on the satellite radio: “You can dance in a hurricane, but only if you’re standing in the eye.”
Indeed, they have a point. You can move how you wish, but only in the eye of the storm. Dancing is impossible when you’re being whipped about.
This is where the earnestness comes in.
It’s one thing to be funny about the TV remotes and hobbit feet flying every which way through my life. It’s another to find the eye of the hurricane, a place of counter-intuitive calm at the center of the blowing fence posts.
The eye of my hurricane is Jesus. When I’m centered spiritually, the storm still blows, but I am not caught up in it.
Less-centered me would be tempted to think, “Well I like Jesus, too, but I don’t see how He is the eye of the figurative hurricane. How does that even work?”
I think it’s a blend of trying to be like Jesus, which includes doing what He taught, and genuinely believing He will give you strength beyond your capacity. Not just theoretically. For real. Actual forgiveness. Actual empowerment. An actual refuge.
This is what I’ve been learning in the last twelve months since I embarked on that unexpected and non-ironic spiritual journey. I’ve begun to figure out how to center myself in the eye of the storm and be peaceful there.
Yesterday as we left the psychiatrist’s office and walked to the parking terrace, I thought about the gift that Dr. M is in our lives. It was drizzly and gloomy outside, but I felt like I lived in a garden sprinkled with mirrors, bouncing light around and above me.
We have a psychiatrist who has known us—all of us—for years, and who gets how it really is. She is an ally. She gives us the meds that make daily survival possible.
Despite the February dreariness, I am not dreary. I am filled up and content.
My boys have therapy every weekday in our home. Our insurance covers it. It’s helping them make real progress. All of these things were impossible, even a few years ago.
We have the very best respite helpers and therapists, support coordinator, behaviorist, pediatrician, ENT, gastroenterologist, teachers, classroom aides, speech and occupational therapists, and bus drivers. By and large, my family has faced, almost exclusively, acceptance and kindness when it comes to the boys and their challenges.
The boys have outgrown babyhood, and unlike many moms of the world, this is not something I lament. My children’s baby and toddler years were the hardest time of my life. They were the darkest, most grueling season. Those years felt insurmountable, but we have come through them.
As I drove through the city toward home, Charlie asked me 85,000 questions about Abraham Lincoln and the U.S. Treasury building and how many days it was exactly until St. Patrick’s Day. Truman ate fries and hummed. This thought pierced me, “Do you see how much I have done for you?”
It was a gentle, direct rhetorical question, prompting me to take stock of our path through the valley of misery, and out of it.
With sheer serendipity and angels aligning stars and so forth, we have found a weekend program for Jack. We have been looking for this for literally years. In the past, whenever we would find a place, they would tell us they didn’t take individuals with behaviors (irony, since these are the individuals who NEED weekend supports), or didn’t have enough staff or clients to make Saturdays a go. Or they didn’t like working weekends or holidays despite the immense need (and business opportunity). The few places that did provide Saturday care were full. We faced brick wall after brick wall, all while managing Jack and our other children every difficult weekend into perpetuity.
I have hated weekends for so long. I don’t remember looking forward to a weekend. It’s been years.
Except that is changing. This is the second weekend Jack has attended his LITERALLY PERFECT day program. Saturdays and Sundays, you guys.
God knew all along what Jack needed and what we needed so we could help Jack. When we couldn’t find our way, He found it for us.
This is my miracle.
- Taking care of myself in a physical sense is easy on vacation. It just is. I have worked out every day and my back and hip are thanking me.
- I can sleep like a teenager, despite being an old person comparatively speaking.
- At times, I’ll think of what the boys are doing at any given time. But I’m relaxed because I don’t have to make it happen. It’s a kind of muscle memory, I guess, keeping track of everyone’s schedules even when I’m removed from them.
- I don’t care about publication, at all. I don’t care about home renovation. I don’t care about exotic vacations. Which isn’t to say that those things are wrong to care about. I just personally do not care about them. Are you depressed, you might ask, since you claim not to care? Here’s the thing: I am not depressed. I feel peaceful. Even. Happy and calm. I feel good.
- What do I care about? Teaching. My children. Jeff. Taking care of my core (never thought I would utter that phrase). Asking God what He wants me to do, and then doing it. If that sounds self-righteous, that’s not my intention. This is how I feel, and I like it.
I think this might be balance.
There is a law irrevocably decreed in heaven that when you are planning a rare getaway with your spouse, one of your children will start vomiting.
Such was the case a few days ago, when Jeff and I felt the dream of the desert oasis hideaway slipping through our fingers as a certain child persisted in tossed his cookies. Then another child told me his right ear hurt. “Do I feel sick?” he asked me, at the Instcare clinic. “Only you can answer that question,” I squarely told him.
And so, our hopes were flickering. You know what made me hold on? The thought of sleeping in. That and reading a lot of books. And grading a whole pile of papers at once, without being distracted.
“It may still happen,” we said to each other, more than once. But we maintained caution. I got crabby thinking about the possibility that all our planning and preparation on the childcare front (a serious feat) might be for naught.
I think the hardest part wouldn’t be not actually going on the getaway. I kind of hunker down when there is no option for escape and find homey ways to cope. Hygge, if you will—finding enjoyment in the simple pleasures. Carving out time for the things that hold me up. This week I felt the greater sorrow would be thinking we would get to leave, of coming so close to going, only to have it foiled by vomit.
Dear reader, the vomiting stopped. The ears, it turned out were not infected. There was no strep either. Everyone got better.
And thus we miraculously drove off into the desert, talking about our goals and dilemmas, and books about British history, with which I am weirdly obsessed.
Obsessed, and grateful.
I am struggling to feel competent in my physical strength. I think I have always struggled with this, possibly because I do not hail from a line of gracefully coordinated or athletic types. I do not see myself as physically strong. Doing physical therapy for my core goo has proven to me that I am, indeed, not exceptionally strong. I’m getting stronger, but comparatively it feels subtle.
And it doesn’t help that I just read a Robin McKinley book. Her protagonists are women who literally slay dragons. They can live alone in the woods through a winter, with only a knife and a dog for company. They face beasts and violence with bravery and fortitude. It usually comes close to killing them, and yet, it doesn’t.
I feel my mortal limitations. I am a woman. I feel weak, not emotionally or mentally or spiritually. Just my physical self.
There have been eras of my life where I haven’t felt weak, such as a) when I was a kid on the swim team, toasting my peers in the breaststroke and freestyle, and b) in the years when I had no kids, or just two kids, and I walked basically every day. I tromped around parks, hiked trails, and wore an imaginary footpath through my neighborhood. I exhausted three jogging strollers, though to be frank, I do not actually jog. During these periods, I found pleasure in moving and felt rejuvenated rather than inadequate in my fitness attempts.
Is it that I’m older now? Is it that I have four children, whose demands on my time sometimes feel like fetters? Is it the comprehensive nature of special needs parenting, which places constant pressure on my neck and shoulders? Is it that I am a mortal woman and not a Robin McKinley heroine, who is ostensibly mortal but suspiciously superhuman in her strength?
The physical therapist tells me that I am getting stronger. I can feel it, too. Really, there is so much I can do, but these days I do it with more pain. I can walk and lift my five-year-old and carry groceries and laundry. I can do things like vacuum the church of a Saturday morning for a solid hour and restrain a violent Jack on the floor, keeping out of the way of his teeth and hard, hard head.
I am capable of doing what I need to do. I am emotionally unafraid of facing the realities of life with a nonverbal, mentally disabled preteen. I am spiritually astute in that I have trained myself to listen. I spend less time trying to validate disobedience and more time rushing to be obedient and then looking around expectantly for the blessings. In a cognitive sense, writing, reading, and teaching keep me from stagnation and lift my mood. I feel capable in those aspects of my life.
Maybe I’m sufficiently strong, with the potential for improvement.
Maybe facing my physical limitations is my next baby dragon to face.