I needed to slow down things at home. I needed to understand how Thorin processed information. I noticed he took the path of least resistance. When working on his reading one day, I observed he said “that” for “hat” or “down” instead of “away.”
I asked, “Are you guessing?”
“Yesith!” he responded cheerfully.
“Did you guess at school?”
“Yesith!”
I slapped my hand on the table, “From now on we live in No Guessing Zone. We’ll sound out the words instead.”
I remembered Kathy’s advice about using Thorin’s interests, so I created reading material suited just for him. I titled the sheets “Thorin’s Super Awesome Sentences!” The sentences had meaning for Thorin: “Thor eats cake with Iron Man”; “Spider Man can make blue cake”; and “Hulk likes smash cake.” There was also Thorin’s Super Great Cake Sentences, which were hyperfocused on cake, no Avengers. “Let’s make a cake! Come look at the cake. Did you make the cake? Who will eat the cake?” And, “I had too much cake.”
I learned Thorin needed more time to respond. Like many parents, I was so quick to interrupt his silence because I didn’t realize he needed more “think time” before answering. Once I made that discovery, I would count to myself while Thorin thought: ten seconds, twenty seconds, thirty seconds, and, once, even forty seconds. What I thought was dead space was actually processing time that allowed Thorin to answer correctly.
Another thing I slowly realized is that learning was a fearful proposition for Thorin. He had been made to feel dumb in the past. When we would start anything new, I would casually take his hand in mine. It worked! That touch, that reassurance, made a difference. Even if he didn’t get it right, he was still willing to work until he did.
We began to learn antonyms. Thorin grasped those for “hot,” “up,” “out,” and “down,” but for more complex words, he seemed to get confused.
“Cloudy,” I said.
“Movie star,” he responded, which totally perplexed me.
I decided to keep giving him words, thinking something had to give. I finally figured out what was going on when he replied “Project Runway” after I said the word “young.”
“Are you saying something you know I like instead of ‘I don’t know’?”
“I am.”
“Did you do that at school?”
“I did!”
At that point, I began to understand his strategy at school: get them to stop asking anything.
I looked at Thorin smiling and told him, “It’s okay not to know something. From now on when you don’t know something, just say ‘I don’t know.’”
“Okay,” he told me smiling back.
Thorin loved having a book read aloud to him, but reading a book with me was now intimidating. I knew he could do it but I had to figure out how to convince him he could.
“Thorin should we write a story?” I asked excitedly.
“Yeah!”
“Okay, let’s come up with some characters. Who should be in it?”
“Cow! And horse!” he yelled.
“Awesome! What do they do? What’s one thing they do?”
“Eat cake!”
“Big surprise.” I smiled. “Okay, where’s the cake?
“In kitchen. Cow and horse take it!”
“I like it! A cake caper!” I applauded.
“Should we have pictures in the story?”
“Yeah!”
Thorin had always drawn and painted. He had an easel since he was three years old and could paint for an hour at a time. He made beautiful, expressive drawings. I had never thought to exploit that passion until now.
I found the online program Art Hub for Kids, which featured videos of a father who taught his children how to draw. Thorin and I both learned how to draw a cake, a cow, and a horse that day.
One of the things Ward and I lamented was that Thorin never once told us what he had done at school. This went back to preschool. One of us would ask, “What did you do today? When he was younger, he would shake his head no. Later, the answer was always “don’t know.” We never stopped asking. In the past, we had asked for the specifics of Thorin’s day when talking with the teacher or Ed Tech. We used those details to tease out a response from Thorin. It didn’t matter. He never offered anything about his day.
The day we wrote our first story together, Ward asked Thorin, as he had every night for years, “What did you do today, Thorin?”
“Make story and draw!”
Ward and I looked at each. He did it!
“Thorin, that sounds great! Show me!”
Ward and I hugged each other close that night after Thorin had gone to sleep.
“He did it, Ward! He told you about his day.”
“I know. Best night, ever. We’re on the right track, Kari.”
“I know.”
By December, Thorin’s reading went from the bag of laminated sight words from Ms. Alice to sight words in sentences to Bob Books to Dick and Jane. His math skills grew to counting to 100 and beginning addition. His learning increased more in those four months than during his entire public school education. He was half of an inch taller. And, he started taking photographs again.
I also discovered what Thorin and I were doing was a hybrid of unschooling and homeschooling. Unschooling is child directed and geared around the child’s interests. Homeschooling is more curriculum based. We used curriculum for math and some language skills, and everything else I created based on Thorin’s interests through daily living.
Not only did I start to see Thorin mature academically but also emotionally. Our dog Walt was fifteen years old—very old for a German shepherd—and he had serious health issues. Ward and I had talked about what would eventually happen to Walt. And, Thorin had started to notice Walt wasn’t able to do the same things. The forts he built for the two of them now had a cushy bed for Walt. He told Walt it was “okay on floor” when he stopped jumping on his bed at night.
In January, Walt fell down on a walk. He wouldn’t let me pick him up; instead he crawled back to the house. Once home, Thorin sat and petted Walt’s head, telling him over and over, “Okay, Walty, okay.” A week later, we had to put Walt to sleep.
“Where Walt now?” Thorin asked me.
“He’s in heaven.” To help explain, I made a rudimentary drawing complete with Walt’s ascending soul.
The next day at breakfast, I saw Thorin was wearing his backpack.
“What’s that for?”
“For Asgard,” he explained.
“You’re going to Asgard?” I asked.
“Yes. To see Walty.”
I realized I must have made heaven sound a lot like Thor’s birthplace.
“Honey, Walt’s not in Asgard.”
“Yes. I go now.” Thorin sounded adamant.
A few days later, Thorin had a dream about Walt.
Thorin told me, “Walt happy!”
“I know, Thorin. I know.”
He started dancing around the room singing, “Walty alive at night in our dreams!”
Thorin had pulled out all the stops for his best friend, voicing a sentence that expressed all his thoughts.
I learned part of our education at home was reprogramming the previous, narrow opinions heaped on Thorin.
One day, I said to Thorin after he read a new book, “You are so smart! I’m proud of you!”
“No,” he said, tears welled in his eyes.
“You are. Believe that. Okay?”
Some days, homeschooling became an exercise in how often my heart could break.
A few days later, Thorin wanted me to leave the room while he read.
“Say the words out loud though, okay?”
“Yes.”
I said I was going to do the dishes but instead I tucked myself on the other side of the door to listen to him. He was doing great, then silence. When I stole a quick look, I found him staring back at me. He looked sad.
“Hey, I wa
nt this, okay?” he told me.
“Okay,” I said.
I understood Thorin was as invested as I was in his learning.
Over time, I figured out at school Thorin was seen as a boy with limitations and at home I saw only his potential. Thorin’s guesstimates and his trying to distract me with what he knew to be interests of mine were savvy tactics that might be used by anyone who is uncertain of himself. His long pauses that led to understanding can be applied to many of us, and not necessarily just those of us with a diagnosis. Thorin’s absence of faith in himself is relatable to anyone who has ever been judged. His preferred nakedness was well within the bounds of boyhood.
At school, Thorin was perceived different from his peers in every way. Down syndrome was the single overarching principle used to understand Thorin. That restricted picture resulted in other children treating him as a baby—his most consistent complaint—and being unworthy of education by professionals. The lens I choose to understand Thorin is not distorted by his diagnosis. The lens I choose is clear and open and full of possibility.
During the month of February, my mom lived with us after she passed out in a restaurant. She was taken by ambulance to the hospital.
Thorin asked, “Bubba die?”
“No, not now,” I replied trying to assure him.
My mom was more dependent on me. It was hard for both of us. Sometimes, she resented needing me, and I resented being needed. We fought about the most ridiculous things, but we also had deeper conversations. Our relationship was much richer and more honest now that it was clear it was also time-limited. She, Thorin, and I spent many days together cuddled on the couch reading. Thorin slept with her every night. Most days, I was grateful to be at home for both of them. I was supposed to be doing this.
After nine months of homeschooling and spending close to ten hours per day, five days per week with Thorin, I had changed. Some changes were noticeable—I could not only cook but loved cooking. Other changes snuck up on me. I don’t know exactly when it happened, but Thorin started offering daily commentary on what I was wearing.
One morning, I came into the kitchen with a head wrap on, which I thought was very chic and practical because it was humid and I have wavy hair. He looked up from his cereal grimacing.
“What’s that?”
“You don’t like it?”
“No, no. Off now.”
“Now listen I like it . . .”
Thorin covered his eyes and said, “Very bad. No!”
I took it off.
Another day, I put on a pair of boots with my jeans tucked in.
“Oh, no. No. Go back.”
“I like the way it looks!”
“Ick!” We agreed I could cuff the jeans above the ankle.
A few weeks later, a black quilted vest I ordered arrived. I put it on.
“It’s great, right?” I said seeking Thorin’s approval. At that point, I didn’t realize I had been brainwashed.
Thorin picked up the bag it had come in and said, “Put in here now.”
“I love this.”
“Bad, bad, bad. No good. Ick.”
I decided to ignore him. I wore it out that day. Every hour or so, he would say something, such as “really bad,” “stinky, stinky,” and “so sad,” even signing the word “sad.”
Ward hadn’t actually seen the vest on me when he accompanied me to the mall store to exchange it. I shuffled through all the vests, trying each on and hating them.
“I should have brought Thorin to help me,” I said aloud.
The look on Ward’s face was of true concern. “What are you talking about?”
“Thorin likes to help pick out my clothes?” Why did it sound like I was asking a question?
Ward in very serious tone asked, “Kari, tell me exactly why you’re returning the vest?”
“Thorin hates it.” I realized how wacky it sounded as soon as I said it.
“Kari! Thorin is eight!” he said emphatically. In a more soothing voice, he said, “Put the vest on.”
After I put it on, Ward told me, “You look great. That is a perfect cut for your body.”
“It is?” I said unconvinced.
“Kari how long has this been going on?”
“I don’t know . . .” I didn’t want to say maybe months.
“Has it occurred to you he may have an ulterior motive in trying to manage your choices?” This sounded like an intervention.
“Oh no, he is messing with my head!” A full-on epiphany moment.
In the car ride back home, I thought about how to handle this whole situation. I realized I mustn’t be direct. I didn’t want him to know I had been duped. Ward helped me by making a big show of how much he loved the vest on me.
“Doesn’t Mommy look beautiful?”
“Yes! Pretty Mommy!” he said beaming.
While Ward let Coco out, Thorin sidled up to me.
“Not for you! No!” He sounded like the kid in film The Bad Seed.
“Hey, I’m on to you!” I sounded firm in my conviction. I would be keeping the vest!
I was puzzled by something. Thorin still had a hard time putting sentences together when he talked, but when he read aloud, it was amazingly understandable. Ward, my mom, and Betty had also commented on the notable difference. Since homeschooling, Thorin had continued to see his out-of-school speech therapist three times a week. He had made great strides with her, but it was clear he had a way to go toward being understood. I asked her about the contrast in communication between talking and reading.
“He has apraxia.”
“Apraxia?”
“It’s a motor speech disorder. He knows what he wants to say, but the communication between his brain and coordinating the muscle movements necessary to say those words is blocked. Generative language is hard. When reading, he sees the words; he doesn’t have to figure out what he wants to say.”
“Why am I just hearing this?” I was incredulous.
“I don’t know.” She was blasé.
It was a lesson for me in not assuming I was getting all the information I needed about Thorin. I clearly needed to be asking more questions.
She continued, “Imagine all the thoughts he wants to express, but the opening for them to come out is a very thin straw.”
I had suggested a similar hypothesis years ago—that Thorin had more to express—to his preschool speech therapist but had been discouraged by her.
“Okay,” I said to his speech therapist. “This is the first time I’m hearing this from any speech therapist.”
“Not all speech pathologists understand apraxia.”
“So the therapy he had gotten before . . .”
She nodded her head, “Probably wasn’t effective.”
I imagined how much work Thorin was required to do for things most of us take for granted. Also, the phrase “thin straw” struck me; his words parsed through a straw was like his breath gasping through the same metaphor in the ER years before.
Each month, Thorin started a new theater class at the museum. He still didn’t participate in the final performance, but it didn’t detract from him enjoying the class. However, it did make me have concerns for the dance recital that was scheduled in May, particularly since we had to purchase an over-priced glitzy outfit for the end-of-the-year performance. I shared my concerns with Heather at the dance school.
“Don’t worry. He’ll do it. Ms. Alivia [Thorin’s dance teacher] has a 100 percent success rate with recitals.”
I gave her the check for his costume and hoped for the best.
The day of the dance recital arrived. And as predicted, Thorin participated in the performance in front of 200 people. He had on black slacks, a brilliant white shirt, a black vest with shiny sequins, and a pink bow tie. He’d asked to get his hair cut a few days before; it was very short and stylish. When he walked out on the stage, he looked taller than I had remembered. His head and chin were pointed up, his shoulders squared. I saw how composed he was. Thorin
stopped to give a quick wave to Ward and me. Then, his focus shifted to the audience as a whole. He glowed. It was then I saw he was not doing this for us—it was for himself. For all those months, he had prepared to perform something he loved doing.
I was used to Thorin’s Avenger inspired tales, such as “Hulk is at the library with the Baby Avengers. He eats the books and some people. The woman says ‘Shhhhh!’ and ‘Quiet!’” But one day, he told me a violent story that I actually wanted to edit. We started the usual way.
“Okay, have you thought of characters?
It took a minute, then he said, “A Baby Robot Teacher.”
“That’s specific. What’s the name?”
He thought for a moment more, “Um…Kicky Waters. Cries a lot.”
“Kicky Waters cries a lot?”
“Yes.” He had moved on from “yesith.”
“Then what happens?”
“At school. Stab ten red chickens. Died.”
“What?” I was horrified.
“Died. Wear glasses.”
“Wait. Who’s wearing glasses?” I was trying to keep up with his story.
“Chickens.”
“Kicky Waters stabbed the chickens?”
“Yes! Girls and boys saw. Screamed!”
I bet they did.
“This is a horrible story.”
“Yeah. Chickens zombies now.”
“The chickens turned into zombies?”
“Yeah. They eat mother.”
“Who ate the mother?”
“Zombie chickens.”
“Could it be ‘They ate humans’ rather than ‘They ate the mother’?” I was starting to take this personally.
“No! Not!” Thorin replied insistently.
Later, Thorin told the story to Bubba.
“Just one mother?” she asked.
“Yes, one,” he said.
“Who is the mother?” she asked.
Thorin pointed at me.
“Oh, Thorin, you don’t really want zombie chickens to eat your mother, do you?” she asked.
“Yes, I do.”
“Thorin, if they ate your mommy who would drive you all over town?”
Not Always Happy Page 23