Teddy was not allowed the same freedoms his peers were when he was very young. I vividly recall when he and I went to McDonald’s with a group of women and children, mostly toddlers, from a Single Mothers Support Group and I was criticized for being too strict with Teddy. I insisted that he sit and eat, be polite, and ask to be excused to go to the play area. The other children were running back and forth from the play area to get a bite of food or to direct the conversation to them. I tried to explain that I felt Teddy needed to be held to a higher standard of behavior to help him have all the opportunities I wanted for him in the future.
Teddy had proven his ability to behave under pressure repeatedly before. He attended the New York Metropolitan Opera five times, tucked into a baby carrier under my coat before he was discovered during the first performance in warm weather. An usher told me Teddy would not be allowed in. I reassured them that Teddy and I had attended every subscription performance of the year so far and he had never made a sound. If he did, I would be the first to want him taken outside. We were allowed to stay, and I was apologized to during the first intermission.
Teddy had also dined with me up and down Columbus Avenue without incident. I’m sure we made a rather comic sight. Mark, Jim, and I, often with several other men would arrive at a restaurant decorated with white starched tablecloths and candles carrying in a diaper bag, a portable high chair, and a very little boy. We were never turned away, but I am sure it was often discussed where to seat the bunch of men with the baby.
Throughout Teddy’s toddlerhood he was always the perfect companion whereever we went. I was mortified when he began to start biting other children when he was four. I was almost sure I would have to withdraw him from nursery school. We discussed biting at length, and I seemed to make no headway. In anger, one day after he had yet again bitten a classmate, I bit him. I can still remember the stunned look on his face. Against all odds, this did end Teddy’s biting rampage.
Perhaps one of the most frustrating behaviors Teddy had when he was young involved control. Teddy was potty trained at twenty-three months, and never had accidents. But, he learned that he could pee in his clothes and our plans to go out would change. If Teddy did not want to go to school, or speech therapy, he knew that I would get so angry when he peed in his snowsuit or clean clothes that I would often cancel our appointments and just stay home. He continued this truly obnoxious habit until our lives became less complicated after we moved to Michigan.
In Michigan, Teddy suddenly had more freedom of movement than he had ever had before. In New York, lived on a fourth floor apartment and he considered his home to be the whole building. A very heavy locked door separated him from the rest of the world. Teddy knew all the neighbors, and he was welcome in any of their apartments.
In Ann Arbor, we lived in a housing development. The door of our house led to neighbors’ houses and streets in all directions. Teddy constantly disappeared from the house. Often, he would announce he was going next door, but change his mind and go elsewhere. I spent what seemed like endless hours yelling for him. I wanted him to be free to visit neighbors, but I worried about his safety – I just wanted to know where he was. I could not make him understand how important this was. I considered all sorts of tracking devices created for hunters.
I eventually hit upon the idea of giving him a pager. Whenever he left the house, he had to have his pager, and it had to be turned on. (I eventually taped it on semi-permanently.) Instead of yelling and worrying about him and punishing him when he wasn’t where he said he would be, I paged him. He was supposed to come straight home or get someone to call me immediately when he was paged. Other parents thought I was crazy, but it worked. In Michigan, in England, and New York Teddy would wear a pager without fail. He understood the pager to be his source of freedom; not unlike the freedom a person who uses a wheelchair feels. No pager, no access to freedom of movement.
The next behavioral issue we would confront would happen in kindergarten. Teddy would periodically just leave the classroom. The teachers did not know why he was leaving, but he never left when I was helping out in the classroom. A bell was put on the door so at least it would be known immediately when he left. I watched the classroom unobserved to see whether I could determine when he walked out. I thought the pattern I saw was when Teddy was frustrated with an activity he wanted to do, but couldn’t, he would walk out. Against the advice of his teachers, I decided Teddy needed a really powerful angry word to say to express his frustration. I taught him to say damn. His teachers were not pleased. Damn became a very commonly heard word, until I taught Teddy to say it just as loud and just as angry, but inside his head. It took awhile for the walk outs to stop, and I began to wonder which looked worse on a record – being suspended for walking out of class or for saying damn.
One foolish thing Teddy insisted on doing involved his beloved red square dance slip. He would take it to school or wear it outside our house. He had a backpack he took to school, and some days he would also take a swimming bag. He often sneaked the slip into his bag and would try to wear it at school. His classmates were surprising tolerant of Teddy wearing the slip in kindergarten and first grade, but I eventually had to create strict rules about the wearing of the square-dance slip. If Teddy took the slip to school, he lost access to it at home for a week. If he wore it outside the house, he was grounded for the rest of the day. Slowly, over time, we eventually ended the struggle over wearing the slip to school, but I am not at all sure my punishment had anything to do with it.
From first grade on, I was more worried that Teddy was too passive than about poor behavior. Teddy’s very frustrating way to refuse to participate in an activity was to tune out, or sit and refuse to be moved.
This refusal to cooperate was especially a problem for his teachers. They were unwilling to wait him out. I wasn’t. One day we were shopping at a Meijer store, and he wanted to leave by one entrance and I wanted to leave by the other. He sat down and refused to be moved. I sat down on a bench and waited for him to change his mind. I waited for three hours. Then I decided to leave without him. (I told the awe struck checkout worker that I would be just outside the door.) I got the car and pulled it up toward the door where I could watch both doors. Occasionally during the next hour I would come to the door to see him still sitting on the floor. For whatever reason, he suddenly decided to get up and come outside. I let him in the car, and we never spoke of it.
His teachers could not be so patient (or indulgent), but I felt I needed to take this strategy after an incident in school where Teddy was physically abused in anger. I wanted Teddy to be able to be assertive and this was one of two ways he knew to be assertive. A teacher had taken Teddy by the shoulder of his jacket in an attempt to force him to stand up and ended up holding him in the air by his jacket. He had an abrasion on his chin from the closed zipper. I had him checked for cervical injuries, and he had none. The teacher aide was reassigned. I tried to think what could had have happened differently
My first worry was the issue of abuse. Teddy had passively accepted the abuse. The only reason it was known to have happened is that another adult observed it. Teddy needed to understand what types of things people, even teachers, were not allowed to do to him. If someone did do something they were not allowed to do, what should Teddy do?
I expected the day would come when Teddy would be verbally abused, and I thought I knew how to deal with that issue more easily than physical abuse by a person in authority. I often told Teddy when he did something stupid (like taking the red square dance slip to school) that he was not stupid, but he did a really stupid thing. I told Teddy we were going to play a game, and I would tell him he was stupid, and he was to tell me “No, I am not stupid.” We played this game in the car, over dinner, anywhere we would not be overheard. I would repeat it over and over and insist he be more and more insistent that he was not stupid. We progressed from that to my touching him and me telling him to say, “Stop, I don’t like that.” I found a self-defense video that was designed to teach children strategies to defend themselves against an attacker. Together we practiced the moves until Teddy was competent that he could teach them to his friends.
For the next few years Teddy was on his best behavior, but until recently we had ongoing problems with the police. Teddy at eight to eleven years old was in my estimation old enough to wander about the neighborhood on his own, including taking a walkway that led him to the neighboring housing development where he had many friends. The police would often pick him up and bring him home. They would ask him where he lived, and he would give them directions. I tried without success to convince them that although Teddy obviously had Down syndrome that did not mean he needed to be under adult supervision at all times. Frustratingly, this continued when we lived in England when he was twelve to fourteen, and even briefly in New York after that. An ongoing problem in Teddy’s life is the inability of professional people to see Teddy any differently than the people with disabilities that lived socially isolated lives in their youth.
In Teddy’s first year of high school in Syracuse, we had what seemed to be our most disturbing behavior problem. Teddy had received a paycheck of sixty dollars, and he had wanted it in cash. I was going to let him have only twenty of it at a time, but forget to have him relinquish the excess forty dollars. When I did remember that afternoon he explained he did not know where it was. I asked him did he take it to school, reasonably sure he did as we had been to the bank directly before school. He professed complete innocence. I was beside myself with anger, especially since it was the weekend. I badgered Teddy to tell me where he left the money, and he told me his job coach had taken it from him. That made sense to me, as it would be very unusual for Teddy to have that quantity of money on him. But, I wondered why he didn’t call me or return the money to Teddy at the end of the day. Teddy’s new story was that the job coach borrowed it and would return it on Monday. This upset me even further as I believe the job coach had no right to borrow money from Teddy. I was now angry withTeddy and with the job coach. I called the teacher on Saturday morning and explained what I had learned. She was sure the job coach did not have the money. For a week discussions continued regarding the problem.
Finally, the speech therapist caught wind of what was happening. She discussed the money with Teddy and concluded that Teddy had matured into a new language development stage. He had discovered the ability to play with language and use his imagination. He was no longer able to decipher what was and wasn’t the truth.
The money was never found, and Teddy could not tell me with any consistency where it might have gone. Now I faced what to me was the worst part of the problem, do I punish Teddy for losing the money and lying about it? If so, how?
Usually, a child who plays with language in this way is very young and always under adult supervision and their imaginary stories can easily be distinguished from truth. Should Teddy be punished because an imaginary story was believed and taken on a life of its own? Should Teddy be punished for losing money when it might have been stolen? Most importantly, should Teddy be punished because he has a disability that caused him to behave in a way that was not appropriate for his chronological age, but very appropriate given his level of language development? In the end, he was not punished, but we made some changes in how we handled money.
Our most recent behavioral problem caused me to be as chastised as much as Teddy was. Teddy is eighteen now, and in my mind an adult. In his room he had a magazine he knew he was not allowed to take to school. We had discussed that it was something to be kept private, in his bedroom. He took it to school.
I was called in to remove the magazine, as it could not be returned to Teddy. It was explained to me that he had opened his backpack, and it was visible to school personnel. I was angry Teddy had taken it to school and told his teacher I would pick up Teddy and the magazine. I was told in no uncertain terms that had it been discovered in another way, Teddy might have been suspended. I was criticized for allowing Teddy to have the magazine at all.
We drove home, and I explained to Teddy why I was angry with him. He told me, “My backpack private.” In a continuing discussion it was clear to me that Teddy felt he was keeping his promise to keep it private by having it in his backpack, but could not articulate why he needed to take it at all if it weren’t going to come out of his backpack.
As angry as I was, he was not punished that is unless you consider a daily discussion for over a week about personal space and civil rights to be a punishment as I think Teddy grew to think of it as.