“This is the best place for him,” she told me. “Trust me.”
Weren’t there enough people in our lives? Now added to the mix was a school director, a school case manager, a special education teacher, an aide, an occupational therapist, a physical therapist, and a speech therapist. A couple days before Thorin started school, Ward and I attended our first Individual Education Plan (IEP) meeting. An IEP is a legally binding document that lists the special accommodations a child with a diagnosis needs to participate in school. Later, I came to think of it as “the meeting I try not to cry at” or “the meeting I try not to lose my shit at.” IEP meetings are unnatural. The process goes against every parental instinct to shield your child from criticism, judgment, and inspection.
I didn’t know any of that, though, when we sat down with a room full of strangers for the first time to figure out what Thorin needed. After introductions were made, the case manager for the school asked each person to recommend what amount of service Thorin should receive.
“Let’s start with you,” she said, motioning to the physical therapist. “How much time for PT?”
“One hour should be good for right now,” she answered.
“Okay, speech?”
“Can you wait a sec?” I interrupted. “One hour a week for PT?”
She looked up from her note taking and smiled. “Yes.”
In unison, Ward and I said, “He can’t walk!”
“You two sure are on the same page!” she said laughing. “That’s pretty standard though.”
“Okay, what does a kid who can walk get?” I asked.
“It isn’t about him walking or not,” she said. “It doesn’t work like that.”
“How does it work then?” Ward asked.
Kimmie spoke up, “It’s great you’re advocating for Thorin but . . .”
“We want more than an hour,” I said, cutting her off. “How do we make that happen?”
This was the process for each service: they offered something, and we said it wasn’t enough. The school director attempted to lighten the tone of the meeting.
“We’re looking forward to Thorin being here with us. He’s such a charmer, and what a beautiful child.”
“I know!” I said. “I would love to get him into modeling.”
No one said anything. Complete silence. Alice suggested we move on to coordinating Thorin’s school hours with my work schedule.
The classroom teacher was the last to speak. She described the daily routine and introduced the concept of “typicals” to us.
“The typicals will see him at free play,” she said. “We’ll send a typical into the classroom as a model for him and the others. If we send more than one typical into a classroom, they tend to stick together, so it’s better to just send one.”
“What are typicals?” I asked.
There was an awkward silence.
Ward turned to me, “They’re the ones who don’t have Down syndrome.”
“Not just Down syndrome,” she said. “Any child who’s disabled.”
As we drove home after the meeting, Ward said, “Isn’t that just fucking typical?”
Laughing, I responded, “Those poor bastard typicals.”
Neither of us said anything for a few minutes.
“Is ‘disabled’ the right word?” questioned Ward.
“What about me bringing up Thorin modeling?”
Ward cracked up.
“Kari, the looks on their faces! It’s like you said, ‘I’m going to teach our dogs how to tap dance!’”
The next week, Ward met Thorin’s mother when he took him for his cardiology appointment. Thorin had two holes in his heart. This appointment was a checkup to monitor his condition.
Ward called me at work when they got back home.
“Good news! An ultrasound revealed no holes. That means both holes have closed!”
“Really?”
“Yes, really. We can cross that off the list for him,” he said.
“What a relief!” With hardly a pause, I asked, “What about her being there?”
“She held him, undressed him, and changed his diaper in the office. I didn’t want her to feel short-changed out of her social time with him,” he replied.
Ward had empathy for her that I couldn’t seem to muster. To me, she was the enemy.
“She answered some of the questions about him while the nurse was there,” he said. “She knew more about his history, but when it was about how he’s doing now, she started to answer and then kind of got quiet, so I stepped in.”
“How was Thorin?” I asked.
“He was friendly with her,” he said. “But, she demonstrated so little curiosity about how he’s getting on. I don’t know if it’s that she doesn’t want to acknowledge her lack of guardianship or that it doesn’t occur to her to ask. On the bright side, awkward silence is better than an awkward conversation.”
Thorin’s next blast from the past was his sister. Linda called and said Jade wanted to see him, so we made arrangements with Jade’s foster family to get them together. They had only seen each other once in the last year and a half. On the drive to her house, we explained to Thorin we were going to see Jade. Thorin’s face lit up. He hugged his chest.
Jade’s foster mother opened the door and ushered us in. Jade walked toward us, and I was struck by how small and unassuming she seemed. From what I knew of her, I thought she would be taller somehow or would look like Wonder Woman. Thorin was beaming. We briefly visited with her foster family before she left with us to go to lunch.
At first, Jade didn’t want to order anything, insisting she wasn’t hungry, but we convinced her to order a burger and fries. Thorin sat in a high chair next to Jade, who cut his grilled cheese sandwich into tiny pieces before she started on her lunch. He watched her intently, smiling.
“Do you both work?” she asked.
“We do,” said Ward.
Then a serious vetting session ensued: What did we do for work? How long had we had our jobs? What was our education? Why didn’t we have children? Why did we want to be parents? It was clear she wanted to know if her brother was being treated well. One thing she didn’t ask about was Down syndrome.
We must have passed the test because the conversation moved on to favorite movies and books. Then we all smelled “it.”
“He needs his diaper changed,” Jade giggled.
Ward grabbed Thorin and the diaper bag and headed to the restroom. This was my chance. I had to know how a child becomes heroic.
“Jade, how did you go to the police?”
I knew she didn’t understand the intent of my question when she answered, “I walked there.”
“You’re brave,” I told her.
“Yeah, I hear that a lot.”
After Ward and Thorin got back to the table, I switched topics, and we set up another date for the following week.
The toddler shower fell on the month anniversary of Thorin living with us. Over thirty people came, including Ward’s family from New Jersey and New York. We got everything on our list—which Johannah, who had been a parent for more than four years, had helped us create. My contribution to the registry was a request of Andy Warhol’s portrait of John Wayne to complete Thorin’s western-themed bedroom.
We also received two of the greatest inventions known to humanity: the Pack ‘n Play and the Diaper Genie. If you had asked me even a month before the shower to name the greatest products ever invented, neither one would have made the top 1,000. Of course, that was before I tried to take a shower while alone in the house with Thorin or held a poopy diaper and an entire pack’s worth of dirty baby wipes, wondering if I closed the gate at the top of the stairs as a half-naked kid crawled down the hall.
Whatever reservations people had about Thorin having Down syndrome were replaced with welcoming him to the fold. He was held and kissed by one and all while Ella and Evvy showed him off.
“Yeah, he knows how to sign and he can say, ‘What’s that
?’ Go ahead, Thorin, show them,” said Ella about thirty times during the party. He obliged to squeals of delight and clapping.
Ward’s sister Carolyn brought her three children. The youngest, Benny, was fifteen months old, which made him seventeen months younger than Thorin. Benny was built like a linebacker for the Green Bay Packers. He was big for his age, but it was striking to see how tiny Thorin was next to Benny. Carolyn brought Benny’s hand-me-downs, but Thorin wouldn’t fit in any of the clothes for a couple of years.
That day, there was more than one sidebar conversation out of Thorin’s earshot about his status as our son. It was confusing to people, and explaining that was difficult.
“But, he is yours, right?” one friend asked.
“Not exactly,” I said. “He isn’t free for adoption yet. We’re waiting for a court date.”
“You’re going to leave it to fate then,” she said.
“No, not fate. He’s our son. We wanted him to move in rather than wait.”
“If it’s meant to be, it will be, right?” she said with a wink.
I wondered how she would feel if someone said that about her child.
“This is how we got him. He’s our son with a stipulation we’ve accepted.”
“I guess I don’t understand that,” she said, sounding angry.
“That’s the best I can do today.” Now I sounded angry, too.
That night sitting in the backyard, I shared my frustrations with Betty.
“People have such small ideas about parenthood,” Betty said. “She can’t see you feel the same way about Thorin as she does about her kid.”
The beginning of the next month was the kickoff for Linda’s and Karen’s home visits. Linda was easier to have at the house. She was tough and nosey but also funny and smart. Most of her comments were about what a good job we were doing.
“How long is he in that?” Linda asked, pointing to the Pack ‘n Play.
Ward looked at me and winked, “No more than five or six hours a day?”
I laughed.
“Don’t joke with anyone else like that. You would be surprised how humorless some people are,” Linda advised.
Enter Karen, Thorin’s GAL. Nothing was funny to her. She was a lawyer paid by the state to represent Thorin’s interests. Ward and I were in this limbo existence where his mother was making a case for getting him back although she wasn’t following through on stipulations set for her. Karen could stand in the way of us keeping Thorin if she advocated for Thorin’s biological mother over us. She also seemed obsessed with Down syndrome.
“I’m sure you’ve considered all the things he will not be able to do,” she said.
Thorin was sitting in the middle of the coffee table playing with a Curious George stuffed animal.
“No, we haven’t. Who knows what anyone is capable of? Everyone has strengths and weaknesses.”
“What a nice way to look at it,” she said smiling.
It seemed pointless to explain I wasn’t being nice.
Karen was also a proponent of the “people with Down syndrome sure are happy” mindset. Here, she was not alone. One of the most prevalent stereotypes about people with Down syndrome is that they are always happy. The inference here is “these people” are so blighted their personalities are flatten to a single non-discriminating emotion. Until Thorin moved in with us, I had forgotten I had known someone with Down syndrome.
I was thirteen and two weeks away from my Lutheran confirmation. Without talking it over with my parents, I visited with Pastor Larsen.
“I don’t believe in God, so I can’t get confirmed,” I told him. What I didn’t say was that church seemed judgmental to me.
The pastor gave me reasons to get confirmed anyway, including, “You’re thinking about the whole thing too much. I’m positive there are other kids who feel the same way.”
“So it’s up to them to say something or not, right?”
“That’s not what I meant,” he quickly replied. “No one in my thirty years of being a pastor has ever refused to be confirmed!”
My parents were furious. Not so much for the overthinking religion part but for the embarrassing them business. We agreed they would not drag me by my hair down the aisle of the church to be confirmed, and I would volunteer at the church rather than attend the services. My job was to help in the basement with the “retarded kids” while their parents attended the church service. It was a small group of children who had Down syndrome.
The room had dark wood paneling, brown carpeting, and a large table with chairs. There were no toys, construction paper, or anything for a child to play with. I immediately hated the adult volunteer who ran the little gulag. He seemed to get off on how pathetically hopeless he found the children and how great he was for spending his time with them.
“They’re hopeless. We don’t do much here but make sure they stay in the room,” he told me on my first day.
I nodded, wondering why these kids couldn’t be in the regular daycare—my younger sister was on the second floor of the church in the daycare room, likely eating paste. However, one of the kids was not a kid. He looked to be in his twenties. Even as a teenager, I was very much aware he was an adult. His name was Monty. He wore a green suit with a striped tie; his shoes were shined, and his hair combed back. He was dressed for church. In spite of his circumstances, he presented himself in a dignified manner, sitting at the table sipping from a glass of water. I hoped his impassive gaze toward the center of the room was a mask and inside he was able to spirit himself away to another place.
I lasted there one more week. At thirteen years old, I had no idea how to change what seemed so obviously awful to me in that basement.
The first time I heard the word happy in reference to Thorin was about a week after he moved in. I was unbuckling him from his car seat when a neighbor came up behind me. He hadn’t met Thorin officially but he had seen him.
As he looked over my shoulder at Thorin, he said, smiling, “They’re always happy, aren’t they?”
I knew he wasn’t talking about toddlers in general, but I didn’t know what to say. It was like I was in the church basement again.
Two months into parenting Ward notified me that he wanted Thorin to like him best.
“What the fuck does that mean?”
“I want to be the favorite. There’s always a favorite parent, and I want it to be me. You’re bossy so it isn’t like you’d stand a chance anyway.”
You can learn a lot about someone when you start parenting with him. My once noncompetitive mate was now actively campaigning against me in the likability department with our son. When I shared my frustration with Sherry, she responded practically.
“Good! Their fun time away from you is your alone time.”
And, it didn’t help that Thorin refused to call me “Mom.” He called me “Ba” and Ward “Daddy,” or sometimes “Mommy.” Thorin even called the mail carrier “Mom” eighteen months before me. I was an inarticulate syllable, and Ward was a fully articulated word commonly used for someone in a parenting role or a character in a Tennessee Williams play.
Did it bother me? Yes, it bothered me. Sure, I was gratified by the stories of other mothers who told me about how daddies are always the favorite. I had more than one friend suggest Thorin was doing it to bother me.
“No shit!” I responded on all occasions.
However others parsed his decision—and I do believe it was a conscious decision on Thorin’s part—I wanted to hear that word in relation to me. It was important to me, as it would be to any mother.
At one of our visits at DHHS, I unexpectedly met Thorin’s biological mother at drop-off. I came through the door, holding him, and saw a woman talking to Michael. Michael gave a quick wave, and she turned toward us—my nemesis.
I walked toward her in what I hoped was a normal gait rather than what felt like staggering forward. We exchanged brief pleasantries. Then the three of them walked away. I called Sherry when I got home.
“I’m terrified we’re going to lose him,” I said.
“It’s an awful thing waiting,” she said. “It’s just awful. If you can, don’t give in completely to him. Protect yourself.”
When I returned to DHHS, Thorin’s biological mother had already left. I went through what now had become a ritual of the airplane game to get Thorin back in my arms. I asked Thorin how he was as I pulled out of the parking lot.
Nothing. Never anything. He stared out the window.
I asked if he wanted to go for ice cream. He made two thumbs-up in the backseat. No discussion necessary; we both liked ice cream.
A few days later, Ward and I had been copied on an email from DHHS that included an email from Don McCreedy. I found out from Linda he was the state’s attorney handling Thorin’s case. He would be arguing that Thorin be freed for adoption. His role was not ambiguous.
“I should talk to him,” I told her.
“No, you don’t need to do that. Besides, he’s very busy,” she said.
After I hung up, I immediately emailed him. I didn’t see the point in trying to convince Linda what I was doing was okay.
Dear Mr. McCreedy,
I wanted the opportunity to formally introduce myself to you. As you know, we are Thorin’s foster and hope-to-be-adoptive parents. We love Thorin. We can’t believe how lucky we are to have him and very much want to keep him. I would like to know how I could help make that a reality. I am sure this is a bit unorthodox and I know you are terribly busy.
Look forward to hearing from you!
Kari
I hit the send button and waited. Less than twenty minutes later, he emailed back with his phone number: “Please feel free to call me.”
I made sure Thorin couldn’t hear me and was totally engaged with SpongeBob when I made the call. The biggest piece of information was that this was not a slam dunk.
“I want this as much as you do,” he said. “That said, there’s no guarantee.”
Not Always Happy Page 5