Monthly Archives: August 2016

Behavior Modification: A Primer

Dutch and I are done letting autism decide everything in our lives.

This means we aren’t kowtowing to the demands of rigid people who deplore change and who lash out in anxiety when things are different than the vision in their mind. It also means there has been a lot of screaming this weekend (theirs, not mine).

It’s really easy to fall into bad habits carved over time like dry, deep ruts in our routines. Often we give in to demands for treats or rides or rides to get treats or innumerable other things that our children use their whole selves to achieve. It’s difficult when one’s whole family revolves around inflexible people with a propensity to lose their minds when change happens or they don’t immediately get what they want.

Dutch and I are enforcing our own form of rigidity, which is that parents get to decide. Parents decide bedtime. They decide mealtime and snacktime. Parents determine if and when Jack gets to haul the shop vac around or if he must put it and the upright away for safekeeping, even if this request makes him berserk. Parents decide things, not children throwing tantrums.

We are employing Rule Number One of behavior modification, which is, NEVER EVER EVER GIVE IN TO A TANTRUM.

Never! Don’t do it. Wait it out. Even if you feel like screaming, too, which I often do. Remember you are free to cry afterward when the crisis has passed and you have won this round and you no longer need to project the face of pure placid calm against your screaming kid’s torrent of emotion. Cry it out, darlin’, and eat while you’re at it.

But in the midst of the storm, be cool (even if you don’t feel that way). When the kid calms down, again require him to comply with your request. Because if you give in to a tantrum, the kid learns that he has won. He learns that enough screaming means he doesn’t have to do what you’re asking him to do. He understands at a fundamental level that if he freaks out for long enough, he can evade basically anything.

If you’re reading this and thinking, “I never give into tantrums. This totally isn’t a problem for me as a parent,” I invite you to ask yourself the following questions: a) do 75% of my children have autism?, and b) why am I comparing meltdowns? They’re all horrible!

It’s tragic that meltdowns are a way of life for my people, and thus for me because it’s not a pleasant way of life. It’s nuclear freaking meltdown with lights flashing and buzzers blaring and people running around frantically. And it happens daily times three boys.

But not anymore. Now they are screaming because we aren’t giving in, ha.

Dutch and I are immovable. We are Stonehenge to their wind gusts.

We will win.


 

Welcoming Change

The first week of school has now finished. It’s a big week, with establishing routines and readjusting everyone’s sleep schedule, including my own.

I took a giant nap this afternoon before the bus delivered Charlie and Jack home. The kind of nap where it takes you a good fifteen minutes to fully drag yourself back awake, and where you hair is smashed and weird, and your mind muddled. It felt great.

And then–Sodalicious. We can celebrate that it’s Friday and school’s back in session.

I’m contemplating change, of late.

I used to seek change, because any change had to be easier to cope with than the current reality of toddler Jack or young Jack despising baby Charlie, or having a premature baby with two middle brothers going off the rails. Anything was better. I prayed and yearned for change.

It did change, but it took time.

Whenever I hear a mom say she laments her newborn growing out of the newborn phase, I realize how different my parenting experience has been. My babies screamed. Their anxiety and sensory integration issues translated into perma-screams as our ambient noise. If they weren’t screaming, it was because I was a one-(wo)man band juggling balls with my left hand while playing a harmonica and kicking a big bass drum with my feet. While attempting to feed the hungry screamer with my right hand.

I kept the wailing at bay with nonstop motion and constant sensory input. This is why I don’t relate to people who are sad when their babies get bigger. When my babies got bigger, we were a step closer to happiness, independence, and the ability to process and tolerate the world.

So I like change. I welcome it. I have enough optimism left in me to feel that there is the potential for good in all change. It may be painful at first, but it opens new avenues. We may proceed in the direction God is pointing us, toward something new. Something better.

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Flesh and Bone

I have stayed away from Facebook for a few days, even deleting the app from my phone, because reasons. And you know, it’s been nice. I never thought I would say this, but I am saying it: “I DO NOT MISS IT.”

I’m keeping it cozy with Instagram, where things are mainly happy and kind, lovingly filtered and easy to process. Also Twitter, which is the opposite of Insta, but which I love just the same for the hilarity of random tweets penned by Millenials, for no other purpose than to be hilarious.

I’m sure I’m not finished with the Facebook forever, but I needed to leave it alone for awhile, and I didn’t even realize it. Does this count as a cleanse? Because if so, how very healthy am I? *ate Reece’s Pieces while drinking a soda a short while ago*

Anyway, without fb and with a total absence of FOMO (fear of missing out, yo), I am here, thinking about bodies and aging and appearance. Perhaps I’m thinking about this because I can’t get away with essentially living as I please and expecting my body to just fall in line anymore. Also, our parents are dealing with the effects of aging. And I’m looking at Henry who is in NINTH GRADE. I remember ninth grade vividly, and time is warped.

I keep thinking that the way we look is such a big part of human identity, but it’s always changing. I started as a fat baby, called “the bowling ball” and also “moo goo gai pan,” by our babysitter, Sharon. I shot up as a young teen and still remain as tall as the average man. My weight vacillated between giving birth to my children. It wasn’t entirely their fault, though. I made choices about chocolate and, at times, onion rings. I own this.

And when I went to the temple this week and watched the senior ladies working there, I thought about how age changes our features dramatically. I have morphed over decades from the bowling ball baby to the awkwardly tall teen to the postpartum dough woman with no core muscles to speak of to…the me I am now, who wears glasses and risks lunch lady arms if she doesn’t use those hand weights I store next to my shoes.

What will I look like when I am stooped and wrinkled and rickety? I looked at the ladies in the temple with their paper-thin skin and their neck wrinkles, and I decided it doesn’t matter. I love those ladies for being there and serving though they probably have throbbing knees or backs or finger joints.

Seeing the core of things is one of the bonuses of being in the temple. The trappings and the appearance do not matter. It’s not about that. It’s bigger than that. It’s spiritual and inward. The body is merely a vehicle. It isn’t how we are judged.

Isn’t it funny that the inner us, the soul is the same no matter what age we are or how we look outwardly? Inside we are still us. Old, frail, thin, knock-kneed, graceful, young, pudgy, graceless, quick, slow, wrinkled, smooth. We remain ourselves.

Inside, Jack is still the Jack he was before he was born, back before the disabilities. He will still be the same Jack after he sheds his earthly coil.

It’s astonishing to me.

 

Waning August, Tiny Letters

Dear Me,

I know it’s been a great summer with the Sodalicious cookies and the salt and vinegar chips. But get a grip, missy.

Back away slowly from the super delicious junk food.

 

Dear Me,

I’m proud of you for staying calm in the grocery store parking lot when Truman lost his marbles over shoes and ice water and wet hands. Good job, you.

 

Dear Me,

Writing tiny letters to oneself is weird. And yet…

 

Dear Boys,

I see what they mean about feeding growing people like you. This is a real and very wild phenomenon. That giant cartload of food I bought a week ago has evaporated. I need an intern. Who does the shopping.

 

Dear Book of Exodus,

You get better with age and a second (or third) reading. I’m flying through you like you’re a novel. Who knew that tales of bondage and plagues and a guy named Moses could be so addictive.

 

Dear Late August,

You are being so good to me this year (*knocks on wood*). I don’t hate you anymore. I think you are lovely. You are the bridge between the hooligan freedom of summertime and a return to normalcy. You give us just a hint of fall really early in the morning. I like you.

 

Dear Earth,

Thank you for spinning around the sun and tilting just so to make seasons a thing.

 

Dear Back to School open houses for Jack and Charlie,

You guys, I wasn’t looking forward to dragging my boys in for the ubiquitous visit to the classroom this week. But you know what? It wasn’t that bad. Reality is sinking in for the guys that summer truly is ending. They are processing it. Meltdowns were minimal, so thanks.

 

Dear School,

How do I love you? Let me count the ways: life-giving structure, satisfying organization, blessed routines. I can go on.

 

Dear my front yard,

August is when you are just the loveliest thing. You do so much with so little attention from me. In August, you flourish. The dogwoods are crazy huge. The zinnias and marigolds and that purple flower that isn’t lavender but I can’t remember its name are flush and glorious. Thank you, growing things, for growing even in a laissez-faire garden with a mainly absent gardener.

 

Dear God,

Thank you for zinnias. And Norwegian spruces. For English laurel and all that’s green. Thank you for light and sleep and writing and little and big boys and new starts and life on earth.

 

 

 

 

V Day

Today was the sort of day where I repeatedly thought to myself, “This is a great day. A really good day. The kind of day I wish could happen all the time, because NORMAL. And basically successful.”

This was not a vacation day, mind you. I was not at the beach or the pool or in Europe or at a day spa. I did not sleep all day, or go shopping, or read books, or do anything other than the regular and the ordinary. But it felt right, like I had found a rhythm possibly.

I woke early and I went for a walk, where the pearly sky blushed pink, before ebbing into lavender.

When I came home, I stretched on the floor while Jack lounged in the armchair.

I mixed and administered meds.

I made hash browns and eggs which we inhaled on buttery croissants.

I showered.

I started Truman’s bath.

I packed Jack’s lunch.

I prepared Jack’s afternoon meds a second time, because he tossed the first batch in the sink before I could pack it in his backpack.

I listened to some of the war chapters in Alma, which btw are thoroughly Shakespearean.

I printed my syllabi.

I told Jacky to be a good boy when his ride to camp picked him up.

I put pants on the four year old.

I told Charlie that soldiers rolls up their sleeves because they get hot. This was in response to his line of questioning about why soldiers do this to their shirts *Charlie pantomimes rolling up sleeves*

I told the boys to go downstairs and wake up Henry so we could go to the orthodontist.

I did my hair.

Five minutes before go time, Henry was still asleep.

Texting and hollering down the stairs ensued.

We all piled in the car.

Henry got his braces off.

Henry ate a chocolate doughnut and declared eating without braces to be the most amazing thing in the world.

I drove to the site of my university writing classes, which is off-campus at our local high school (long story short, there isn’t enough room on campus for all the people, hence remote learning sites, to which I say, “huzzah for a teeny tiny commute, yippee!”)

I located said classroom, which is a computer lab (yay!) but at which no one was available to tell me how my university students would be able to login to the high school system (boo).

I drove to the university to photocopy my classes’ syllabi.

The department copy machine stopped copying halfway through because I had exceeded my allotted number of copies for the month. I exceeded my allotted number of copies for the month because the university required me to include, verbatim, a whole lot of boilerplate policy stuff, which made my syllabus twice as long.

I begged the administrative assistant for help. She entered her code and finished my copies. I love her.

I drove home and cleaned the kitchen.

I drove Jack to get a cookie. Junior and I got cookies too, obv.

Jeff and I had a belated anniversary date wherein we ate spicy food and then saw a WWII movie.

So while the day wasn’t outwardly phenomenal, it just felt so very manageable.

Even when I showed Charlie the back-to-school postcard his teacher sent him, and he wadded it up into a ball and threw it on the counter and declared he wasn’t going back to school, I still felt fine about all of it. When Charlie smoothed out the wadded up postcard simply so he could rip it into tiny pieces, I swallowed my laughter and told him to drink his meds. And I felt fine.

I felt capable.

There were no Code Browns or angry tongue face today.

The guys were happy, mostly. Except for thinking about back to school.

I was happy.

We were essentially completely functional, in our not entirely normal way.

I felt today that we have fully embraced our oddities. We have reached a point in our family growth where we have immersed ourselves in our differences and emerged like Katie Ledecky.

Me and mine are victors.

Sorry autism, we win.

 

Nineteen Years Later

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I.

Yesterday was our nineteenth anniversary. It felt two parts lovely to be married to my Jeff and look at my lovely children and go to church. It felt four parts sheer lameness as we cleaned up the sheetrock from the holes Jack has bashed in the walls of his bedroom and the insulation he pulled from the holes.

Before church, Jack dragged the fan in from the mulch pile by the deck where he tossed it a few days ago, and plugged it in, sending a layer of grass, dried leaves, and dirt all over my bedroom floor. He tried to pull the TV from its wall mount. He tossed all the blankets from his bed over the stair railing and into the entry. He stuffed shredded wrappers beneath the couch cushions. He tossed toothbrushes from his bedroom window. He removed the screen from Jeff’s office window and broke the metal frame into pieces.

The naughtiness was so calculated and relentless, I thought it must have been another illness. Jack is the naughtiest when he doesn’t feel well. And he had literally just finished yet another course of antibiotics for yet another ear infection. (Insert sad/frustrated face emojis). Sundays for Jack are the absolute worst. He seems to always be sick. We don’t like taking him in to be seen on weekends because it’s some random on-call doctor who doesn’t know anything about him or us. Jack is complicated.

At some point in the afternoon, Jack fell asleep on the beanbags in the basement. When Jack takes a weekend nap, it is the best gift that anyone could ever give me. When Jack sleeps, the entire household sighs peacefully. Jeff and I curled up for a nap of our own—the highlight of the day. If Jack napped for three hours a day every day, I think I could handle basically anything. Siestas should be part of our culture. The end.

Also, being married for nineteen years means that you are basically old people. I was nineteen years old when I met Jeff, for Pete’s sake. For the record, I was twenty when we got married, but only just. NINETEEN YEARS, people. It’s a long time, and yet it also moves faster than you think. It’s true what people say about time speeding up, and I blame children.

II.

People have been asking how I feel about Truman’s diagnosis. Honestly, I feel pretty good. I already knew it, at a semi-conscious level. I’ve been processing it for a year or more. I believe I have accepted it.

Truman is, like all people, complicated. He is easy and wonderful in some aspects, and really difficult and frustrating in other areas. He’s Truman. It’s all good. We will get him the help he needs and move forward.

It takes some coaxing to get Truman to eat food. There is screaming at times. We sometimes have to talk Charlie down off a figurative cliff when he spins out and obsesses about things like light sabers. But this sort of daily autism stuff isn’t Jack.

My real challenge remains the same. Because of the nature of his disabilities, Jack remains the most time-intensive kid and the most destructive force in our home. It will probably always be this way. Other issues crop up, but they do not supersede Jack knocking holes in walls and pulling out handfuls of insulation to spread to the four winds.

My friend Shirley sat by me in Relief Society yesterday and I told her all about the walls and the destruction. I can tell her the complete truth because she listens without acting horrified. She hugged me and said, “I wish there was something I could do for you besides pray for you.” But her hug and her prayers and the fact that she will listen without trying to solve the unsolvable are really the best kind of help. I need understanding and I need friendship. I have both. I have lots of both.

 

 

 

Tabitha

It was a different experience at the psychiatrist’s office this week.

The neuropsychiatric clinic has moved from the squat, dark 1970’s building with the unfortunate carpeting and the rabbit-warren offices to the spanking new top floor of a building downtown. Everything is light-filled, modern, and perfect. Where there were once ancient toys in the moldering waiting room, now there are iPads built into a glossy white wall. The contrast is striking.

It felt appropriate that the surroundings weren’t the same, because during this routine visit for my two youngest boys, our psychiatrist told me that my youngest son, Truman, is on the autism spectrum.

This means that seventy-five percent of my kids have autism.

I have suspected this for some time. Dr. M evaluated him a year ago and diagnosed my youngest son with generalized anxiety disorder. At that time, she didn’t feel he displayed enough signs to be diagnosed with autism.

But this time things had changed. She saw what I have been seeing for months. Truman, aged four and a half, has pervasive anxiety. He is now increasingly rigid, wanting things to go exactly as the image in his mind tells him they should go. When they do not, he is overcome and melts down.

He has stopped eating most foods; we are down to about four or five things he will reliably eat, and they still have to adhere to his strict requirements. He requires the same treatment for gastrointestinal issues that both Jack and Charlie need. He covers his ears at loud noises, just like Jack and Charlie do. He needs chemical intervention to fall asleep at night and to keep the feral anxiety wolf at a reasonable distance when he is awake.

When Truman began needing all the same strategies, techniques, and meds that his two brothers on the spectrum need, I would tell myself, “Dr. M thinks Truman is fine.” But in my belly, I knew I was deluding myself.

And so, the world completed another rotation around the sun. Truman screamed a lot and cried over things which seemed small to the rest of us, but which felt disastrous to him. He has resisted potty training with his whole being. We are inching closer to age five and we just can’t check it off the list. Whenever we use public bathrooms with those heinous auto-flushing toilets, Jack, Charlie, and Truman all cover their ears in unison. They talk loudly in quiet places. They panic about all the things. While they have differing ability levels, the way they see the world and respond to it are quite similar.

So why do I feel the need to explain this?

Since I sat in that beautiful new office and heard Dr. M say exactly what I have been thinking for a year or more, I remembered a news article I read years ago about a family with several children, four of whom were on the autism spectrum. I was overcome with emotion at the time, thinking of the parents of these children, who all had diverse needs.

The thing that resurfaced in my memory was something the mother of this family said in the article. She said that people often asked her why they continued having children when autism appeared in their family. She went on to explain that they didn’t know that their older children had autism until after the younger siblings were born. When I read this, I wondered who these impertinent people asking these questions were. It’s nobody’s business. I remember being dumbfounded by this.

And now here I am, sometimes being asked the same question. Why did you have more children after Jack? Weren’t you worried they would have disabilities? The quick answer is, Jack’s syndrome had never occurred more than once in a family, as far as the research showed. We knew there was a risk of autism, but we acted in faith, knowing that our family wasn’t complete.

The long answer is, it’s complicated. And while it’s nobody’s business, I will happily tell you if you honestly want to know.

We didn’t know Charlie had autism when we had Truman. The signs did not appear until after Truman’s birth, and they manifest differently from Jack’s disability.

After Charlie’s diagnosis, people would sometimes ask me if I was worried about Truman having autism. I didn’t know how to respond to this. I didn’t know if Truman would have a diagnosis. Life had taught me not to be cocky about these things. I supposed that the people asking the question were projecting their own fears as they wondered about this. Keep in mind, Truman was already born. It’s not like I could send him back, or that I even wanted to. Children aren’t shoes you order from Zappos.

We had our children in faith. We asked God if we should have more kids, and he gave us repeated spiritual promptings to tell us that Charlie and Truman were part of our family, too. I think this is the hard part for some to understand. If you don’t believe in asking for divine intervention, or if you don’t think it exists, then it may not make sense to you why someone would ask for direction and then follow it, even when it seems counterintuitive.

I feel it’s important to say that Autism Spectrum Disorder truly is a vast spectrum upon which probably all humans could be placed. At one end of the spectrum are individuals like Jack, who is nonverbal and profoundly delayed. Somewhere near the other end are individuals like Truman, who have many abilities even as they face sensory, social, or other challenges. There are as many variations in how autism may affect people as there are people with autism.

My littlest boy, who we call Baby, is charming and sociable. He is bright, determined, happy, and funny. He has a big vocabulary and an excellent memory. He is the same terrific little boy today that he has always been.

The day after Dr. M told me the news, I was cleaning up the breakfast dishes and contemplating my family. I abruptly remembered Tabitha from the New Testament. I’ve always liked this story because a) it is one of the few in the scriptures that actually names a woman from ancient times and b) the name Tabitha has just the right amount of history, sass, and style, and it isn’t on any top ten lists, which makes me love it. I once held it in reserve for the day I had a daughter (which turned out to be a mythical day, but whatever).

Over the years, I had two noteworthy experiences in the temple connected to Tabitha. I relate Tabitha’s story to my family, because in both instances, I went to the temple with the express purpose of asking God if we should have another child. In both cases, the answer was a clear yes.

The story is found in the Book of Acts, where we read that there was a disciple named Tabitha who lived at Joppa. She was known by her good works and generosity. After an illness, she died and was laid out by her grieving friends, who heard that the apostle Peter was nearby. The women sent two men to ask Peter if he would come to them.

When Peter came, he went into the chamber, “and kneeled down, and prayed; and turning to the body said, ‘Tabitha, arise.’ And she opened her eyes: and when she saw Peter, she sat up. And he gave her his hand, and lifted her up, and when he had called the saints and widows, presented her alive. And it was known throughout all Joppa; and many believed in the Lord.”

For years, I thought my Tabitha/temple experiences were about a little girl who would be mine. But after receiving diagnoses for yet another of my children, the spirit clearly told me that that isn’t the meaning of this experience, which repeated itself exactly the same way a second time, on a different day, in a different temple.

I stood in front of my kitchen sink this week and looked out the window at the rustling leaves on the Cottonwoods, and the shade dappling the grass and the trampoline. I remembered that every time I asked God about my future with my children, he audibly responded, “Tabitha.”

I now understood that God was comparing my life to her story.

Tabitha was a woman who wanted to do good for people. When she died, Peter used the priesthood to raise her up again as a witness of God’s power in those who believe.

I’m not always filled with good works. But my children give me unending opportunities for giving and serving, because that is what they need. Handling three boys with autism has at times felt like it’s killing me. And yet, with another kid’s placement on the autism spectrum, I feel peaceful. My boys are special, and God loves them even more than I do. Experience has shown me that when I pray and keep going with even a kernel of faith, Jesus stays with me. He is strong when I am not.

Sunlight slanted onto my hands last Tuesday as I stacked dishes and cups. As I worked, I heard the spirit whisper to me that, like Tabitha, God is raising me up.

Peter said Tabitha’s name, and she rose from death.

When I beseeched God about my family, he said “Tabitha,” and lifted me from sorrow.

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