What’s wrong with “hey, Mister, you need to do more around the house?”
It was a difficult time. Ward saw me as a nag, and I completely understood why. He wasn’t putting things back where they belonged—that’s right, things belong in specific places. Ward’s response to my criticism of his cavalier ways was often “Who Moved My Cheese, Kari?” In his mind, he was scolding me for being too petty. I knew he’d never read the book; he was just quoting me the title. One day hearing that comeback, I lost it.
“Ward, I spent twenty minutes this morning trying to find the vacuum attachment for furniture! Do you want to know where I found it?”
“Not really.”
“In your bathrobe! Which was in a ball on top of the refrigerator!”
“What’s your point?”
“I don’t have twenty minutes! And that book doesn’t have anything to do with nagging wives! That would be some jerky husband to write a book making fun of his wife searching frantically for stuff . . .” And then of course I started sobbing uncontrollably, just like Mary Tyler Moore in The Dick Van Dyke Show. “Oh, Rob!”
Ward put his arm around my shoulders, “We have to figure this out, Kid.”
That’s exactly what Rob Petrie would have done on The Dick Van Dyke Show.
We did figure it out a little bit at a time. We had also forgotten about a strategy we had come up with years before. It was a simple phrase that helped us out of some horrible arguments. When the disagreement became unproductive and opportunities for hurting each other, one of us would try to remember to shout out, “UF not FU!” (United Front not Fuck You!) It was a reminder we were on the same side and we needed to rely on each other’s strengths, not our weaknesses. It was a rallying call to our better selves. We hashed out how to get back to being on the same side when we had created a wedge made of “if only” and “you always.”
Ward then asked a very practical question. “I don’t know what I do to bother you until it’s too late, and you’re mad.”
Isn’t that the truth? That’s a whole book on the dynamics of females and males; Uh, What Did I Do This Time? could be the title.
“Excellent point! Act like a guy who wants to get laid. That should keep you on your best behavior!” I offered enthusiastically.
“Alright, I can try that. What are you going to do?” he countered.
“I am going to act like it’s important to me that you not think I’m a bitch.”
“Sounds good,” he answered laughing.
Soon after, a challenge came our way we were united on. We needed to move from our triplex. Our neighborhood was changing. We had known there was likely illegal activity going on in the house across the street and ignored it until the night I walked into the living room to find Thorin standing on the couch with the shade pulled up. Outside stood an ambulance, a fire truck, a crime scene investigation unit, and three police cars. Ward talked to one of the officers. There had been a stabbing, and the victim claimed he had fallen on his knife. Somehow that didn’t seem plausible to us having watched all five seasons of The Wire.
Thorin, Coco, and Walt hated the move so much they all tried to escape. One afternoon, I was working at the dining room table in our new apartment when I looked up from the computer and saw a woman in cut-off shorts, a halter top, and high-heeled sandals walking down the middle of street with Coco in her arms while a man with an impressive pompadour drove a Thunderbird convertible slowly behind her. I felt like I was watching a scene from a John Waters movie. I tore outside.
“Oh! Our Coco!” I yelled from our porch.
“Listen, Hon, your Coco almost got smashed by us!”
“Oh, how terrible! Thank you for getting her home!”
A week later, I was working at the computer again and looked up and out the window to see a little boy with a cowboy hat standing next to a German shepherd. I screamed, and instead of running out the front door, putting me about ten feet from where I saw them, I went to the den to check to make sure it wasn’t their doppelgangers outside. I flew out the backdoor and ran to the front and around the corner where I saw them ambling side-by-side down the sidewalk.
I caught up to them quickly. I grabbed them both toward me. Thorin tried wrestling away to continue their walk. Walt looked at me as if he were saying, “Hey, where were you?”
“You’re too young to leave the house alone,” I explained to Thorin.
“Not lone,” he smiled, pointing to Walt.
“You have to have a human with you.”
Later, after deconstructing the situation with Ward, we discovered he’d left the backdoor unlocked when he left for the store, and unbeknownst to us, Thorin’s physical strength was such that he now could open the door. We also realized he must have let Coco out the previous week. In addition, I had been engrossed in my work. Although Thorin was in the next room, he was unsupervised for several minutes, which immediately made me realize how children fall down wells. I was beside myself thinking about what could have happened. Getting hit by a car was at the top of the list.
“Thorin is getting stronger, that’s a good thing. And, Walt is a good dog,” Ward pointed out.
I wrote about that incident on the blog as well. Ward heard from another party, “Kari needs to be more careful! That was dangerous.” Everybody likes to give me parenting advice.
Aside from Thorin developing muscle tone and strength, he was promoted at school from the Caterpillar Room to the Rainbow Room. I thought it was my duty to prepare him for the transition to the new classroom, which was right next door to his old classroom—not in another school or on Mars.
“There’s no reason to be nervous about the Rainbow Room or the new teachers,” I said to Thorin as I set down his juice. Oh, boy! I was the nervous one!
Thorin looked at me wide-eyed, then he covered his ears.
“No, no, no, no . . .”
Ward overheard us from the bathroom then leaned out.
“Stop talking! You’re freaking him out!” he whispered.
“Who wants ice cream for breakfast?” I offered.
The distraction was enough to get Thorin back on track. Ward entered stage right, and before sitting down, he gave me the raised eyebrow look. After our ice cream breakfast, I was able to hold it together until we arrived at school.
As I walked with Thorin to the new classroom, I told him, “Oh, my, you’re going to have fun today!” But I couldn’t just say it once; I repeated it down the hallway. By the time we got to the doorway, he clung to me refusing to go into the classroom. I looked to the new teacher.
“What do you suggest?”
“Leave quickly,” she said in a very deadpan voice, her eyes hooded.
I didn’t understand why I had behaved like that until I talked to Patty at work.
“What are you really afraid of?” she asked me.
“I don’t know.”
“I do. The Caterpillars were divided up. Some went to the Butterfly Room, and the others went to the Rainbow Room. You asked what the difference was and you didn’t feel like you got a straight answer, right?”
“Right,” I replied tightly.
“What do you think the difference is?” she asked sympathetically.
Sighing I said, “I think the Rainbow Room is not as challenging. I think they’re holding Thorin back.”
Patty shook her head. “He doesn’t get to become a butterfly.”
I bit my lip. “Right.”
I think some staff members thought we pushed Thorin, and Ward and I thought some of them had low expectations for him. Other staff never interfered at all. Several months earlier, Thorin was at a standstill with talking, and he was ignoring many instructions. The speech therapist saw it as part of his speech deficiencies and distractibility issues. I talked to Dr. Peggy, his pediatrician, and she sent us to an ear, nose, and throat doctor. Thorin needed tubes in his ear, and after a hearing test, the doctor determined Thorin was likely having difficulty hearing clearly from even a few feet away.
It was also discovered Thorin had permanent, mild, bilateral hearing loss. The doctor confirmed that Thorin’s poor hearing could stall his speech development and account for not following directions. The speech therapist was appropriately embarrassed and apologetic, and she referred all the children on her caseload for hearing tests.
Once his tubes were in, his speech gains were apparent to us but not as readily to the speech therapist. At home, I was secretly—unbeknownst to Thorin—writing down what he was saying. The school agreed to do the same, but the notebook was often blank. At home, he used a combination of signing and talking. He was saying things, such as “I want more, please”; “I don’t want to”; “Don’t want it”; “Go outside now”; “Mommy help me”; “Taking dogs out”; and “More waffles, please.”
A few times, he would make observations that felt thrilling. Pointing to the stars on his pillowcase, he said the word “stars” then pointed to the ceiling and said the phrase “stars in the sky.” And, during a walk, Thorin heard a bird tweeting above us in a tree. He pointed up and said, “Birdy! Birdy in tree. Hi! Birdy!”
When I told the speech therapist, she was not as impressed.
“Imagine all the thoughts he must have he can’t express,” I said.
No response. She just looked at me quizzically.
She then informed me Thorin couldn’t follow one- and two-step tasks. I knew that wasn’t true. I had no problem with him following through on three-step directions, like “Thorin, get your shoes and sweater and meet me at the door.” I asked her for an example.
“I asked him to get my pencil from the shelf, and he couldn’t do it.”
“Shelf? Where’s the shelf in this room?”
She pointed to the play kitchen.
“Why would your pencil be on that?”
“What do you mean?”
“It’s an odd place. I’m guessing Thorin knew you were testing him. He doesn’t like that. Maybe give him a two-step request of something you actually want. I would make it real. Also “shelf” is a funny word.”
“What’s so funny about it?”
“Well, I don’t know if Thorin has ever heard that word.”
She crossed her arms tight over her chest. I could see the conversation was frustrating for her, but I found her assessments stagey.
The disagreements with the staff didn’t stop with the speech therapist. During an IEP meeting, a recommendation was made that “Thorin will reduce the number of antagonizing behaviors to no more than once per day with no more than one teacher prompt for five days in a row.” I was surprised.
“Antagonizing? What behaviors are those?”
“Well, he taps kids on the shoulder over and over again and also nudges them in the ribs with his elbow,” the teacher said.
Without thinking, I said, “Oh, I know where he learned that!”
“Where?”
I knew my answer wasn’t going to go over well.
“From me. He and I do that to each other to be funny.”
Ward audibly groaned, garnering laughs from the group.
“The other kids don’t think it’s funny.”
“No, of course not. I’ll just tell him to stop. I’ll explain it.”
“There are other things, too.”
“Like what?” The frustration in my voice was clear.
“It might change from day to day.”
Against our better judgment, we allowed the goal to be added. An IEP meeting can elicit all kinds of emotions and confusion. Sitting with nine professionals, who are recommending what is best for Thorin, becomes exhausting, and confusion over what is fact and what is opinion becomes blurred. It wasn’t until later I realized the goal—to reduce antagonizing behaviors—seemed contradictory to their positive philosophy. Wouldn’t the goal have been to maximize positive interactions?
The most dramatic difference in perspective came from Thorin. At dinner one night, Thorin’s eyes welled up, then tears fell down his face.
“Hey, what happened?” Ward asked, concerned.
“No,” as he continued silently crying.
“Are you sick?” I reached out toward him.
“No!”
Ward went to put his arms around Thorin.
“Hey, come here,” he said gently.
Thorin pulled away.
“No! Top!”
I slowly leaned in and asked, “Okay, okay, Sweetheart, did something happen?”
Thorin signed the words “scared baby.”
In a soft voice Ward asked, “Who’s the scared baby, Thorin?”
“Me.”
I shook my head. “Thorin, you aren’t a baby.”
“Yes, am!”
“Thorin, what do you mean?” asked Ward.
“Kool.”
“At school?”
Thorin nodded his head.
“Did someone make you scared?” Ward asked.
“No! Me!”
“You’re a scared baby at school?” I asked.
He nodded yes.
“Oh, that’s not good,” I said.
“Done now.”
“Okay, we’ll talk more later,” Ward offered.
“No more.”
“Alright. Thanks for telling us,” he told him.
“Yes. Good. Top.”
Thorin got up and left the room.
After he went to bed, Ward and I marveled at what Thorin was able to tell us. We agreed we should meet with the school staff together. I talked to Louise the next day about setting up a meeting. The meeting would take place before school the following day.
I was the first to speak at the meeting.
“A couple nights ago, Thorin told us he feels like a scared baby at school. No one here did anything he just feels . . .” My voice trailed off; this was harder than I thought it would be.
I turned to Ward, and he jumped in.
“We don’t think he feels like that all the time.”
Why were Ward and I being so protective of their feelings instead of just describing what transpired with Thorin? Maybe they did contribute to him feeling like a scared baby.
Louise spoke up, “Thorin is always so happy! He struts around with confidence.”
Yeah he’s always so happy unless he is doing something antagonizing, I thought.
Ms. Deadpan, the teacher from Thorin’s new classroom, said very deliberately, “How exactly how did he tell you that?”
I sensed a direct challenge, but was she questioning our credibility or Thorin’s ability to communicate? I wished I had asked her that, but instead I said, “He started crying at dinner so we tried teasing out what happened. . . .”
Ward interjected, “He signed ‘scared baby.’ I asked him to explain and he said ‘kool.’”
“That’s it?” Ms. Deadpan responded.
“Well,” I said, “I asked if he felt like a scared baby at school. He said yes.”
“It sounds like you fed him that idea,” she countered.
Ward and I looked at each other. The discussion became about the validity of our story. In their defensiveness, they were forgetting the quarterly report we had received from them the week before, stating “His peers struggle to understand Thorin and have difficulty understanding and interpreting the additional modes of communication that Thorin utilizes. Also children in play tend to move from one thing to the next rather quickly and have often moved on to the next topic while Thorin is commenting.” The report also noted Thorin played alone 50 percent of the time.
Thorin feeling like a scared baby didn’t seemed far-fetched to us. Under those circumstances who wouldn’t feel like a scared baby? We started to wonder when did those “antagonizing behaviors” occur? Was it when the others moved on from him as he was trying to communicate? Was it being alone more often than not? Could the IEP goals have been for the staff to intervene and allow Thorin to finish his thought? So many wonderful things had happened for Thorin at the school, but the concerning things were tipping the balance. It was disco
uraging.
Thorin would start kindergarten in less than a year. Ward and I were concerned he would not be prepared for public school. I shared our concerns privately with Louise.
“You’ve got nothing to worry about. Thorin will be eligible for a self-contained classroom,” Louise commented.
In essence, the self-contained classroom would be like the Rainbow Room without a cutesy name.
“Louise, we want Thorin to be in an inclusive classroom, not self-contained.”
She looked surprised, “We wouldn’t recommend that.”
“Research shows that kids in inclusive settings do better academically and socially.”
“You can actually wait on kindergarten. You can delay another year. Keep him here.”
Thorin would be six, almost seven years old when he started, though. As it was, he would be almost six years old when he started kindergarten in the fall. What would lead us to believe they would start raising the bar? We were fundamentally in opposition regarding Thorin. I told Ward we needed less of them and more of something else. He agreed wholeheartedly. With only nine months before the first day of kindergarten, I started looking for a miracle school.
Within a week, I found a school. After speaking with the school director, she recommended I talk to another mother whose daughter attended the school and had Down syndrome. On the school tour, we ran into Amy and her daughter, Maggie. Ward and I stopped to chat with her, and Thorin and Maggie set off to play in the stairway.
Amy asked, “How old is he, again?
“Five.”
“She’s five, too. When is his birthday?”
I told Amy the date.
“That’s her birthday,” she replied.
Ward and I said, at the same time, “Wow!”
Not Always Happy Page 12
