Not Always Happy

by Kari Wagner-Peck

Amy pushed ahead rapidly asking more questions. What State was he born in? Same. City? Same. Hospital? Same.

  I got goose bumps. She explained that a few hours before her daughter was born, a boy who had Down syndrome was also born at the hospital. The boy’s mother was in a room three doors down from Amy. The hospital staff thought it was a great opportunity for the two moms to meet, given their mutual bond. The boy’s mother said yes to the meeting and then changed her mind. Ward and I stood there with our mouths open, shaking our heads.

  Amy was crushed when the mother changed her mind. “I was sure it meant something that these two babies were born within hours of each other.”

  “So you never saw him until now?” I asked.

  “I did see him in the nursery. I went to be with Maggie but I saw him a couple cribs over, so I did go take a peek at him. He was beautiful.”

  It was bizarre to be meeting someone who had seen Thorin at birth. That’s when I realized Maggie was part of Thorin’s origin story—a story many adoptive parents never get to know.

  “For the last five years, I looked on the local Down syndrome parents’ webpage checking to see if a boy with that birthday had been entered. At events, I would ask people if they knew the boy. I was afraid maybe he had died.”

  “You had a look on your face when you started asking.”

  “I just had this feeling!” she said. “This sounds so strange, but when I saw him just now I did wonder. They both have blond hair, blue eyes, and they’re the same size. They could be . . .”

  “Twins,” we all said in unison.

  We scheduled the first of many play dates over the years with Maggie and her family, including birthday parties, of course.

  We ended up not transferring Thorin to the new school, realizing it would be too disruptive for Thorin. I sat down with Louise, and we were able to move toward a common goal named Thorin. The staff would lift the bar on his developmental delays. I would restart our relationship there by being more honest. I would, however, never cotton to Ms. Deadpan. She made it clear she thought she knew what was best for Thorin. I made it clear I thought she was an annoying gnat.

  I realized that I was asking for the bar to be raised for Thorin at school, but at home we were using covered cups because he was still throwing whatever he drank. I feared he would be in high school, drinking out of a sippy cup. It was time for tactics.

  One morning at breakfast, I got up my nerve and put his juice in a child-sized coffee cup with a Santa face on the side of it; I had to steady my hand.

  “Hey, here’s our favorite guy, Santa!” I said as a distraction from the fact it wasn’t a covered cup.

  “Oh, yeah!” said Thorin.

  For the next several minutes, I smugly observed Thorin drinking his juice. This was a snap! I wished I’d done it ages ago.

  Ward walked into the room. “Alright! A big boy cup!”

  I tried to telepathically send him a pleading message: Ward, what are you fucking thinking? Why call attention to the cup?

  Thorin looked at us, smiled, and dropped the cup and its contents on the floor.

  Thorin had been with us 1,068 days. Figuring three meals a day—omitting snack time—that represented 3,204 meals. Given those parameters, I calculated he had thrown his juice and milk, around 6,500 times. I knew it meant something. I was convinced his pools had meaning in the way Nabokov in Bend Sinister used puddles, ink stains, and spilled milk to reflect upon tenderness and beauty. I knew Thorin’s puddles had depth but I didn’t know what they reflected.

  A few months later, Ward and I attended a conference for parents of children with Down syndrome. We were particularly interested because the keynote speaker was from Boston’s Children’s Hospital. The title of his speech was simply “Behavior.” His first question to the audience was “Does your child throw things?” Ward and I leaned forward in our seats.

  Next, he told the audience that behavior is communication. We learned children with delayed speech and language get upset by not being able to take part in the world of talkers, which goes something like this:

  •No one realizes the sounds you are making are you talking—throw something!

  •Everyone is talking to each other but not you—throw something!

  •You don’t know yet how to get Kyle to play with you—throw his truck!

  I was right! Thorin had been telling us something! His pools had depth! Score one for Mommy! The speaker then went on to explain how to deal with the behavior in a non-judgmental way. However, my long-awaited triumph in understanding Thorin as a real mother does was short lived.

  After the speaker’s presentation there was a Q & A period. I had a question I was dying to ask. What seemed to me to be Thorin’s ability to read my mind was still happening three years later. Keys in the toilet had just been the beginning. It was such a common occurrence I censored my thoughts, concerned he would know what I was thinking and do that thing. I would be thinking of suggesting an ice cream stop while driving in the car when Thorin would pipe up from the back to say, “Yes, want ice cream!” On more than one occasion he yelled, “Bess ou!” from the other room before I sneezed. A few weeks earlier I silently read the printing on the pajamas he was wearing. The design was series of police cars intertwined with caution tape. The text I squinted to read was: Do Not Cross Police Line. Thorin looked up at me. He then traced the line on the cloth with his finger and said very clearly: “Do not cross police line.” He smiled at me as he walked away. I smiled back in a way that would not suggest I was freaked out once again.

  Unbeknownst to me, Ward for the last three years had also experienced Thorin’s uncanny ability to anticipate his thoughts and he, too, censored his inner voice. Perhaps equally as bafflingly as Thorin’s ability, we had never talked to each other about it until a week before the conference. That day we shared numerous stories about what had transpired for the past three years. We could not identify exactly why we had never spoken of it before. We guessed maybe it was the oddity of it. But, finding ourselves listening to this behaviorist, I thought it’s serendipitous. I’m supposed to ask him about IT! As he fielded questions from other parents, I figured out how to phrase my question.

  I turned to Ward whispering, “I’m going to ask him about you-know-what.”

  He immediately knew I meant what we referred to as Thorin’s ESP.

  “Please don’t. Don’t. Don’t.”

  “It will be okay,” I reassured him. “I was right about throwing things.”

  “This is different. Just wait,” he said as he put his hand gently on my arm.

  “I have to.”

  “Oh, God, you don’t.”

  My hand shot up, and the speaker pointed to me. Ward slunk low in his seat with his head down. I stood up.

  “I am a little nervous here. My husband and I said we wouldn’t talk to other people about this, but have you ever heard about children with Down syndrome having . . . for a lack of a better word . . . ESP? You know the ability to know things . . .”

  He made a face of distaste and shook his head slowly, “No, I haven’t ever heard of that.”

  Ward was right; it was a bad move on my part. I sat back down, painfully aware all eyes were on me in the auditorium.

  Later, I was philosophical about it; I had applied special attributes to Thorin because of his Down syndrome. In the same way certain strangers suggested Thorin was an angel from God, I had mistaken Thorin’s psychic abilities as a Down syndrome gift. It made me more sympathetic to people who were likewise ignorant. It was also a painful reminder I needed to be watchful of my beliefs about Down syndrome. It appeared Thorin’s freaky ability was just about Thorin being Thorin, and I could count us lucky he was not like the kid in The Shining.

  First day of Kindergarten

  CHAPTER FIVE

  I Hear You Knocking, but You Can’t Come In

  In preparation of Thorin starting kindergarten, Ward and I were notified there would be a transition meeting. Aside from us, there wo
uld be five people from Thorin’s preschool; a representative from the school district’s special services; a representative from Child Developmental Services; the principal of the elementary school; an occupational therapist; a physical therapist; a speech therapist; a special education teacher; and a kindergarten teacher.

  We notified the elementary school that we wanted Thorin in a regular classroom. We knew from Thorin’s preschool and child services that the request was going to be challenged by the school, but we tried to keep a positive vibe. The preschool staff still did not believe he should be in a regular classroom, but they agreed not to share that information at the meeting. It helped that I had a romanticized vision of the school building, which reminded me of a mini-version of the fictitious Walt Whitman High School from the 1970s TV show Room 222. Freaking Walt Whitman!

  “Maybe this is a good omen! Walt Whitman High was a very groovy, progressive school,” I told Ward.

  “I hope you’re right,” he offered not exactly with enthusiasm.

  The meeting took place in one of the classrooms. We sat at tables arranged in a square, making it feel like a collaborative space. After introductions were made—which took a while given the number of participants—the kindergarten teacher said in a dismissive, hostile voice, “He shouldn’t be in my classroom.”

  WTF! She had never met Thorin!

  I looked at Ward; his mouth was open.

  “Hey, can you say that?” I asked her. I looked around for clarification from the room. I didn’t think she could say that legally based on federal law and the least restrictive environment clause, not to mention common decency. Most of the people in the room had their head down. Thorin’s physical therapist from the preschool—bless her heart—shook her head no. Ward and I turned toward the principal, who was looking at her phone.

  The kindergarten teacher ignored my question and continued. “Kindergarten has changed quite a bit in the last forty years. It’s more cognitively challenging. I don’t see him keeping up.”

  Her statement seemed implausible as well as a not so veiled dig at my age. Were they splitting the atom in kindergarten now?

  “Are any students with disabilities in regular classrooms?” I asked.

  The teacher was seething. “Not with his profile, no.”

  The blessed physical therapist spoke. “When I started decades ago, I had students in regular classrooms. It wasn’t a big deal. It was done. And, school hasn’t changed that much.”

  “Thank you!” I said, beaming, while Ward nodded to her and made the thumbs-up sign.

  The special services person from the district ignored her comment, instead asking the kindergarten teacher, “What are you recommending?”

  “We see him in the developmental classroom,” she said, gesturing toward the special education teacher.

  As if on well-rehearsed cue, the special education teacher joined the conversation.

  “My students have their own classroom. They do come up for the specials—art and music. At those times, they’re with the regular students.”

  “Come up from where?” Ward asked.

  “Their classroom is in the basement,” she replied.

  At the word basement, I felt like I had entered a time warp. I saw Monty—the young man from my youth who was in the church basement—hidden away. Then, I saw Thorin who would never make it to the Walt Whitman High fantasy of Room 222. I shook inside.

  Ward and I were adamant: this was unacceptable. The meeting became a stalemate, and the woman from the district suggested we end the meeting and scheduled a continuation for the following month. When Ward and I got home, we were equally furious.

  “Why was that kindergarten teacher so angry?” Ward practically yelled.

  “I don’t know! Why was she allowed to say those things? It’s so blatant.”

  “Because it’s business as usual. A lot of parents probably say, ‘Thank you for telling me where so-and-so should be.’”

  We decided not to make the same mistake of waiting too long to say what needed to be said. We agreed I would speak to the principal. Unfortunately, she didn’t return my phone calls. The next time I called, I asked the receptionist what time the principal was scheduled to arrive the following day. At the appointed time, Thorin and I roamed the staff parking lot, waiting for her. She was quite surprised to see us, but, to her credit, she pretended to be happy about it. I think it helped she had her son with her, who was a student at the same school. She suggested we walk to the playground. Once there, Thorin took off to explore, and her son found his friends. I started our conversation.

  “I love your school. I could picture Thorin here—but in a regular classroom.”

  “We’d love to have him.” As she said that, we both noticed—at the same moment—her son asking Thorin if he needed help climbing the stairs. Thorin shyly nodded yes, and the boy gently supported his back as he took each step.

  “Your son is thoughtful.”

  “Thank you,” she smiled.

  “Okay, about the transition meeting for Thorin. I don’t understand why the kindergarten teacher was allowed to say he shouldn’t be in her classroom?”

  “Oh, I wished I’d been at that meeting!”

  “What? You were at the meeting.”

  “I was?”

  “Yes. Yes, you were. You recognized me just now in the parking lot because I met you at the meeting.” I felt like I had been dropped into a Joseph Heller novel.

  “When was the meeting?”

  “Last week.”

  “So, she said that?”

  “Yes.”

  “Why don’t I remember that?”

  I sensed I was seconds away from chocolate-covered cotton balls.

  She wasn’t going to fess up to it so I said, “I don’t know, but can we talk about a regular classroom right now?”

  “I don’t think that’s a good idea. That’s the kind of thing I like to leave up to my staff.”

  When I called Ward, he yelled, “She lied! This is a conspiracy!”

  If Ward’s passionate outcry had been made by a character in a John Grisham novel, I would have agreed and said, “Yes! Let’s take her down!” But, there was no documentation that the teacher had made the statement “he shouldn’t be in my classroom.” We didn’t tape the meeting, and if the principal was saying she didn’t hear it, how many others would follow suit? In my mind, Grisham had an easier time constructing complicated plot lines than we did living them.

  “Let’s figure out Plan B,” I suggested to Ward.

  A family from Thorin’s preschool had a son, David, who also had Down syndrome. He had been attending another elementary school an equal distance from our house and was in a regular classroom. I talked to his mom about the school; she was enthusiastic and positive. She gave me a great deal of information about the school, including the fact the classrooms were wired with state-of-the-art amplification.

  We would have to make the case for an out-of-neighborhood school transfer for Thorin. We knew we couldn’t make it based on the other child with Down syndrome. But, we could make a case that Thorin would be better served in a state-of-the-art acoustic facility with his mild hearing loss.

  First, I found out the name of the system they used at the school. I spoke with a technology person from the company, and he was beyond excited to have a real-live person talk to him about the wonders of his product. I probably could have gotten off the phone fifteen minutes earlier than necessary, but he was just so thrilled. He directed me to several research articles based on product data and those written by independent evaluators. What he had shared was confirmed by all the data I found: the system benefited students with distractibility issues and mild hearing loss—evidence of both had been well documented by Thorin’s teachers and specialists.

  Then I sent the information to Thorin’s ear, nose, and throat doctor who, after reviewing the research, agreed to write a letter of support for Thorin to attend the out-of-neighborhood school. Days later, as I compile
d my last pack of documentation for each meeting attendee, Ward suggested we all go out to dinner to celebrate my braininess. I felt, in a little way, like Julia Roberts in The Pelican Brief.

  At the transition meeting, part two, we completely sidestepped the request for a regular classroom and asked for an out-of-neighborhood placement. I presented my data and referred the attendees to various texts that I had thoughtfully highlighted for them.

  Check-fucking-mate!

  Grumbling and futile attempts were made to rebut the request. The kindergarten teacher glared at me during most of the meeting. I wrote a note on my paper—covering it so only Ward could see it—which read “She’s such an asshat,” and I added an arrow so Ward would know which person I was talking about.

  He scribbled over my note and wrote above it: “Stick to the script!”

  When the meeting adjourned, it looked as if we won the battle.

  Summer started two weeks after our request for the out-of-neighborhood school transfer. During those summer months, two major developments occurred: potty training and moving my mom to Maine.

  First, I tackled potty training head-on. Thorin was still having accidents, so he wore pull-ups. I had friends whose children with Down syndrome were potty trained at age two, others at seven, and some in between. Thorin was five years old and wasn’t potty trained mostly because of me.

  When I found out from the preschool teacher I should have Thorin wear underwear and expect accidents, I was horrified. I wanted to wrap everything in plastic, especially me. Just let him pee on the furniture? That was Coco’s job. I couldn’t have two beings urinating all over the house at once. Thorin was pooping in the toilet, but I was convinced it was because it was a better venue to showcase his productions than a pull-up. I was floored the first time he called me into the bathroom to view his poop. He gestured with his hands much like a game show assistant revealing a prize and then said, “Ta-da!”

  I had heard about a clinic called Potty University. Like any sought-after educational institution, it was extremely hard to get into it. I knew our child services caseworker had a few slots for clients, so I called her and explained the situation. She was terrific.